When I came to Europe, I wasn’t sure how long I would stay. I brought enough medication to last three months (the most I could). By the time it ran out, I was already making plans to return to Turtle Island and figured I could get free refills if I waited. I have been waiting a long time now. Emergencies keep coming up that prevent me from having enough money to leave.
I was able to borrow other prescriptions, but the one thing I couldn’t find was my SSRIs (selective serotonin re-uptake inhibitors — a common genre of antidepressants), specifically citalopram (celexa). I had previously considered discontinuing them anyway, but I knew it was dangerous, especially when my situation and my (mental) health are already so precarious. There was always some life-threatening crisis, constant brushes with death, and crushing poverty, so it never seemed like the right time to add another potential hazard. Plus, I had more pressing chemical dependencies to deal with first.
So when I started to run out of them, I figured it was as good a time as any to go off them. I knew the risks when I started taking my SSRIs years ago. So before I quit, I read as much as I could. I tapered my doses downward over a period of months. It has now been several weeks since I stopped taking them entirely and I feel like shit.
I didn’t immediately recognize the creeping, inexplicable (and therefore terrifying) symptoms as SSRI withdrawal. When I first realized it was connected, I was a bit relieved because it seemed to show it was a transitory chemical readjustment. But it kept getting worse and worse and I started to fear something was very wrong, that it must be something else. But the more I looked into it, I found that the scary truth seems to be that this kind of suffering is a relatively normal thing during SSRI withdrawal.
The feeling is somewhat indescribable. It partly feels just like a deep emotional pain, a constant weight in my chest, an agonizing, heavy fog of general negativity over everything, and a general certainty of impending doom. Wikipedia actually does a pretty good job of capturing some of the physical effects:
Symptoms described as “brain zaps”, “brain shocks”, “brain shivers”, “head shocks”, or “cranial zings” are withdrawal symptoms experienced during discontinuation (or reduction of dose) of antidepressant drugs. The symptoms are widely variable in description and are of unknown etiology; common descriptions include dizziness, electric shock-like sensations, sweating,nausea, insomnia, tremor, confusion, nightmares, and vertigo.
I have definitely experienced all of these consistently since I stopped taking my SSRI, as well as a dramatic increase in depression, urges to self-harm, and suicidal thoughts (I’m in good hands, don’t worry). It says elsewhere that flu-like symptoms are common, and I have those too — dry-heaving, morning sickness, fever, cold chills, hot flashes, soreness everywhere.
Many of these are problems I have had anyway for a long time — anxiety, tremors, nightmares, distraction, under/hyperactivity, panic attacks, disembodiment/ depersonalization — so it was hard to recognize at first. But those have all gotten immeasurably worse since I stopped taking the SSRI, and I would go so far as to say maybe even worse than before I started. Other symptoms are similar to what happens when I stop taking my hormones, which I ran out of at the same time. But I have since gotten more hormones, still no SSRI, and it keeps getting worse.
Some of the other symptoms — like the brain shocks, vertigo, sudden loss of breathe / chest pain / numbness in random parts of my body, and paraesthesia — are unlike anything I’ve ever experienced. The closest I can think of is what happened to me after a 3-week opiate binge. Or, its also similar to having a really bad ecstasy hangover and then taking small doses of ketamine. (To be clear, I hate ketamine. It feels too similar to psychotic depersonalization for me.)
And by the way, I had been taking the SSRI for years when I tried to kill myself. So, in my opinion, they had become pretty useless. Perhaps they always were useless. Or perhaps they just didn’t work for me, but might work for other people. I don’t know.
The only thing I know for sure is that, when you consult doctors or even the internet, there are only two solutions to “SSRI discontinuation syndrome” I can find: Take more SSRIs, or take different psych drugs. Those are seriously the only options offered. Which, of course, are not options for people who no longer have access to health care or insurance, like myself currently.
I am not endorsing a blanket opposition to psych medication (which I find is usually based in irrational moral arguments that demonize people with chemical dependencies and people with disabilities who rely on medical technologies). I still take and don’t know what I would do without my xanax, hormones, and other medications. Illegal drugs like ecsctacy and opium have also been extremely helpful. All drugs have their uses and dangers. When I started SSRIs, I knew what I was doing and I was so desperate that I was willing to try anything. I don’t regret it. At least now I know.
But as the effectiveness wore off, I no longer felt it was worth the risk or (literal, monetary) cost. The danger is that SSRIs stop working over time, forcing you to either up the doses, switch to a different SSRI with a slightly different chemical composition, or deal with SSRI discontinuation syndrome. If you’re bipolar and have been misdiagnosed, SSRIs can be extremely dangerous because they can induce extreme mania.
Those are pretty shitty options really, but crazy people don’t often have the luxury of good options. You do whatever keeps you alive, and under present material conditions, the best we can do is put a bandage on the problem. It’s still better than an exposed, gaping wound, but it’s far from treated.
The whole experience leaves me with a few thoughts:
1. Doctors really need to do a better job making clear what will happen to you if you start and later stop taking an SSRI. Specifically, they need to do a better job differentiating between what might happen / what has happened to a very small number of people, versus what almost definitely will happen to you.
Before I started my SSRIs, I read the list of possible side effects and all the warnings. But, like most people, I assumed most of them were things that had happened to only a small number of people and were included for reasons of legal liability. It turns out, in the case of SSRI discontinuation, this happens to basically everyone to various degrees.
I have been taking it for a long time, I have hypersensitivity to emotions, pain, and chemical changes (I can feel withdrawal symptoms within six hours of forgetting my meds for example), I and most of my entire biological family have a history of chemical dependencies, and I’m homeless & heartbroken right now. So it makes sense my withdrawal is maybe worse than it is for some people.
But I still feel like the warnings about SSRI withdrawal are superficial and misleading. I had no idea it would last this long or would be this bad. And it is painfully bad. Many psychiatrists don’t even think twice about it at all.
My last psych, just before I moved to New York, wanted to put me on pure serotonin, a fringe treatment used in cases (like me) where all options have been exhausted and everything else failed. He severely downplayed the dangers to me, but the truth is, no one has any idea because it is a very new and poorly-researched treatment. But given it is basically just a more extreme version of an SSRI (artificially increasing serotonin levels, but by adding it directly instead of stopping reuptake of existing serotonin), I have to assume the withdrawal sucks at least as bad. This was never even mentioned as the psych was recommending the new medication.
Update: Years after writing this article, I have started lamotrigine (lamictal) and quetiapine (seroquel). I received an equally shitty and woefully understated explanation of the risks involved with these meds as well. Surprise!
I got the “lamictal rash” and impaired short-term memory, both of which are very common. Many friends, my peer support community, and simple google searches confirm this. My new psych told me that it was unrelated to my meds! The rash can be fatal — in under 1% of cases, but one would imagine it would at least be worth telling me about that. I have learned more from my community than from my psychiatrist.
2. Although I now know firsthand that anti-depressant withdrawal really is (or can be) as bad as they say, and thus I better understand the vitriolic hatred many anti-psychiatry activists feel toward the medical establishment, I still don’t blame doctors for prescribing SSRIs. That said, there really needs to be a better way to treat depression, anxiety, panic disorder, PTSD, etc.
SSRIs were recommended to me by a trans Latina elder trauma survivor who is a mother and mentor to me and many other people. I was suicidal, she called me and told me the world needed me and gave me something to try. If nothing else, it gave me hope in that moment and that kept me alive for awhile longer.
When I came to my doctors and therapists for help, what I really needed was a complete transformation of the circumstances in which I was living. I needed a way out (or ideally the total destruction) of poverty, I needed a healthy and stable place to live, I needed a supportive community and a world I could walk around in without fearing for my life. After a lifetime of abuse, I needed to feel (and thus genuinely be) in control over my own life and body. I needed healthy food, addiction treatment, and for my trans women of color friends to stop being murdered.
My doctors and therapists couldn’t give me any of those things, the things I really needed to get better. I’ve been a support person as an activist, and I was a social worker for a few months before I lost that job. I know what it’s like. It hurts, and you want to help, but all you can give is a bandage — ever-dwindling food stamps, clothing vouchers, health care applications, charity, a referral for anti-depressants. Essentially, this is palliative care.
The problem is systemic. It can’t be addressed by individual crazy people, therapists, doctors, or social workers. It will require a total social, political, economic, sexual, and gender revolution. The problem is bigger than antidepressants or psychiatrists.
3. In many ways, SSRI withdrawal is emblematic of the larger problems in our society. And both problems require a complete overhaul of social relationships to solve.
In the face of such overwhelming misery, violence, and injustice, even well-meaning people feel powerless to do anything other than offer this palliative care to patients. We are kept alive, but just barely. We feel better for a while, but we never really get better.
People are dying or nearly dying, and the best we can do is offer a treatment which may make the situation worse and will certainly produce new problems in the long-run. We create dependencies both chemical and social, in the sense that patients become dependent on the health care system and profit-motivated pharmaceutical companies to provide those chemicals.
Under capitalism, these dependencies quickly become hierarchies. As with almost everything else in our increasingly privatized world, the 1% have found a way to profit massively from this relationship and the suffering it entails by exacerbating the problem. The root causes of our suffering (poverty, trauma, etc) are never addressed, and because it is more profitable if it remains this way, the entire system becomes so rigged and naturalized that it is nearly inescapable. Even those of us trapped inside it who recognize what is happening feel powerless to change it; we are so desperate and destitute that we will try anything, we go along with, even if we know it will eventually come back to haunt us. Because we don’t have a choice.
Really the only solution is giving us back our choices, and in order to do that, we need food, shelter, health care, and love for everyone. And, in a world where 1% of the population controls access to most of that stuff, the only way to get that is through a revolution. In the meantime, we do what we can and put up with the consequences. Every mindzap is just a visceral, painful reminder that this world has failed and needs to be rebuilt.
[Update: It has been over a month since I wrote this and I feel fine now, physically. Since SSRI withdrawal is mostly brought on by a sudden drop in serotonin, I tried taking 5-HTP and tryptophan (naturally-occurring precursors to serotonin that help your body metabolize/synthesize the ladder) supplements that are usually available over-the-counter or at health food stores. The impact was extremely noticeable; the “brain zaps” became so infrequent as to nearly disappear overnight. The other symptoms were more stubborn, but also started getting better within a few days of taking the supplements. And I had no trouble stopping with the supplements after a week or two. So, while I can’t prove it wasn’t just placebo effect or due to something unrelated, I think it is worth trying. It can’t really hurt! My mental health remains the same; I still get depressed, suicidal, have urges to self-harm, etc. Maybe I am a little more emotionally unstable than I was before I quit the SSRIs; it’s hard to tell if that was impacted because my life is also still very unstable. If it was, it barely changed.]