Lived Experience: What I wish I had known before I stopped taking antidepressants, and before I started

By Brooke Siem, originally published in Washington Examiner

In this essay, Brooke Siem discusses her lived experience with physician nonchalance in prescribing psychiatric medications

My contact with the world of psychiatric medication began in 2001 when I was 15 years old. I was taken to a child psychiatrist on the recommendation of a psychologist I’d been seeing in the wake of my father’s death. In a matter of minutes, I had a script for an antidepressant.

By the time school let out a few months later, I was on two antidepressants and four additional drugs to counter the antidepressants’ physical side effects. I would stay on that same cocktail for the next 15 years.

I learned the hard way that doctors can be remarkably casual when it comes to putting people on and taking them off antidepressants. As I wrote in my book May Cause Side Effects, “It only takes five minutes to prescribe a psychiatric drug, but it can take years to get off them."

It took a suicide scare in 2016 to wake me up to the fact that if my antidepressants were working as advertised, I wouldn’t want to take my own life. In the decade and a half that I’d been on these drugs, not a single doctor or pharmacist had questioned their use. It’s ingrained in much of their professional culture to seek chemical solutions to all problems, even if they are just ordinary and unpleasant emotional parts of the human experience.

Were the antidepressants the problem? Or was I? The only way to know for sure was to get off all the drugs and discover my unmedicated baseline. Because my primary care doctor had been prescribing my cocktail for eight years, I did the responsible thing and made an appointment with a psychiatrist. She suggested I go off the medications one at a time, starting with Effexor XR. I was already on the lowest dose available on the market, 37.5 mg, so she couldn’t prescribe a smaller dose. She said withdrawal effects, if I experienced any at all, would be a little like having the flu.

Instead, antidepressant withdrawal nearly destroyed my entire life. I began to shake within 24 hours of missing my first dose. Then, came the sweats followed by waves of hot and cold. On day four, all my senses sharpened in one unbearable moment. Light burned my eyes. Sound seared my eardrums. Clothes turned from soft fibers to a million needles on my skin.

It was the psychological symptoms that broke me. I experienced violent intrusive thoughts filled with graphic scenes of hurting myself and others. The world outside my apartment was filled with bloodshed only I could see, but I was too scared to tell my psychiatrist what was happening out of fear that she would place me on an involuntary psychiatric hold. So, I holed up and prayed for relief. It went on for weeks, then months. This was antidepressant withdrawal, and it could all be traced back to the swift decision to medicate me at 15, with no plan for how I could safely get off these pills after such a long time with them in my system.

I’m 36 now, thriving without any prescription drugs for the first time in my adult life. I’ve spent the last few years rebuilding a world.

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I often wonder how my life would be different if I knew what I know now or, more precisely, if my doctors had known what I know now. For instance, I was a minor when the drugs were first prescribed to me. In my 15-year-old eyes, my future was most likely to go astray in the event of a low SAT score or, God forbid, not getting a date to prom. It wasn’t my job to question whether the drugs given to me would affect my curiosity, sexual health, or emotional development as I transitioned from childhood to adulthood. That’s what a doctor was for. If they weren’t concerned, why should I worry about it?

The same can be said about the hasty method in which I was pulled off the antidepressants. My psychiatrist was the expert, so why wouldn’t I take her advice and stop the Effexor XR cold turkey? I assumed she was fully informed on the subject after 12 years of schooling and decades of practice. In retrospect, I should have done my own research — or at least tried.

Despite years of patient suffering, research into antidepressant withdrawal has been a low priority. The first systematic review of antidepressant withdrawal did not even exist until 2015, a full 28 years after Prozac was first released to the public in 1987.

Finally, in 2019, the first comprehensive systematic analysis of antidepressant withdrawal found that 56 percent of people coming off antidepressants experience withdrawal symptoms and 46 percent of those, like me, experience severe withdrawal. A separate study of those suffering from antidepressant-associated post-acute withdrawal syndrome found that participants experienced withdrawal symptoms for an average of 37 months, with 81% of participants reporting suicidality as a direct effect of their withdrawal symptoms.

The good news is research now shows that the best way to get off antidepressants and anti-anxiety drugs is very slowly — more specifically, through hyperbolic tapering, a dose-reduction method that calls for smaller and smaller decreases, especially near the end of a taper.

But because pharmaceutical companies aren’t offering their drugs in smaller doses, patients are forced to get creative. In metropolitan areas with compounding pharmacies, pharmacists can create custom capsules or liquid suspensions with exact dosages tailored for the individual patient. In situations where compounding pharmacies aren't unavailable or feasible, patients become their own pharmacists, using drug scales bought on Amazon, tweezers and complicated dose reduction tables.

For people on high doses or multiple drugs, this process can take years. It’s not a perfect strategy, but some studies have found it is more likely to mitigate serious, long-term withdrawal symptoms. Had I known about hyperbolic tapering, it’s likely my book would never have needed to be written.

I can only hope that information about antidepressant withdrawal, along with the dangers of long-term use of benzodiazepines such as Xanax and Valium, certain sleeping pills and even treatments for baldness, becomes part of the initial treatment conversation, and that education surrounding long-term use and ethical tapering of psychiatric drugs eventually makes its way into medical school curricula.

Although lifelong prescription drug use may be the right call for some people despite the side effects and the difficulties of getting off if the need or want arises, not everyone wants to find herself or himself trapped without realizing how she got there and whether it’s even the right thing to be on. For those who wish to experience an unmedicated life, we deserve the dignity of safe de-prescribing.

Brooke Siem a writer, speaker, and advocate for the practice of safe de-prescribing for psychiatric drugs. Her debut memoir on antidepressant withdrawal is May Cause Side Effects. Her newsletter, “Happiness is a Skill,” is devoted to antidepressant withdrawal education, healing from depression and the skill of happiness. Read the original article here.

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