Medication is supposed to make us feel better. According to the Mayo Clinic, more than 2/3 of Americans take prescription medication. Advertisements promise relief for any number of conditions, from debilitating and chronic illness, to help quitting smoking or getting it up. The fine print: a laundry list of side effects, many of which are relatively harmless, but in rare cases could be ‘potentially life-threatening’. Often the promise of relief from what ails us is worth the risk. Statistics suggest that it is unlikely any particular individual will suffer extreme side effects, so we visit our doctor, get an Rx, and pop our pills to make the pain to go away.
What happens when we become the one who experiences the rare, but serious side effects? In 2014, nearly 900,000 serious negative reactions were reported to the FDA, more than 94,000 of which were deaths. While drug companies must notify consumers of potential side effects, there is little mandate on what has to be done when patients report serious ones. So how can we know, really, what kind of risk a particular drug poses- and to whom- without analysis of this data? Without it, we can’t be sure that we won’t end up in more pain as a result of something that was supposed to make us better.
In the summer of 2008 I sought professional treatment for chronic migraines. I had suffered from them since I was a child, and as anyone who has ever experienced them can tell you, they are absolute agony. Migraines are something of a mystery. Unlike other kinds of headaches that can be traced to eyestrain, bad posture, or muscle tension, migraines are linked to the dilation or construction of blood vessels in the brain, so what ‘triggers’ each episode, or each sufferer, can be different. This also makes them insanely difficult to treat.
I tried everything to manage them myself. I kept an exhaustive diary: I listed foods I ate and at what time, what activities I was doing, noise levels, and the kind of light that I was exposed to. I could find no correlation between this data and the frequency or severity of my migraines.
Finally, with a college career demanding focus and migraines often cutting into class and study time, I decided that I needed to address the issue. A cyst in my brain further complicated matters and I sought consultation with a neurologist who suggested I try a recently approved antiepileptic drug, Topamax. My doctor wrote out the prescription and warned me that while getting used to the drug I might “feel….a little bit blonde. So just sit tight until you’re used to it.”
Blonde, I thought, was kind of a silly way to describe a set of side effects- but whatever; I would give anything to find a life without fear of ninjas using throwing stars inside of my head. I had lived in pain for long enough.
Starting on Topamax was pretty uneventful. I was home for a summer internship at the time, and my behavior was standard: forgotten lunches, and misplaced work I.D.s. After a few days though, I started exhibiting erratic behavior: intense mania and creativity followed by forgotten deadlines, or entire projects. I was worried I would be fired for this behavior, and took to avoiding my supervisor. I started losing things more, and remembering things less.
I felt trapped in my own head, as if my body was on autopilot and my brain was just along for the ride. I was unable to express my feelings about the matter because I had difficulty recalling them in order to give them words. As a result I grew increasingly irritable, suffering mood swings and bouts of terrible anxiety. My doctor said to just be patient. I had zero recollection of tasks I was asked to complete, conversations with friends, or even whether or not I had eaten. Eventually I no longer trusted myself to drive to work, so I started carpooling with my coworker.
The final straw came one day when my mom asked me to run out for some cat food from the grocery store. A harmless errand, on roads I knew like the back of my hand, for an item that was more or less as familiar as my own toothbrush.
Four hours later she called, asking where I was. Though I cannot recall most of this period in time, I remember the worry in her voice and the long pause when I told her that I did not know.
I had driven 50 miles away, aimlessly. I didn’t remember the drive, or even why I left my house. Someone came and picked me up, and I spent the entirety of the car ride home crying, unsure exactly as to why I was so upset.
When I got home, I was so angry and sad that I locked myself in the bathroom, counted every single one of my pills, and then flushed them all down the toilet. In retrospect, NEVER EVER DO THIS. For one thing, dissolved prescription medication can contaminate local water supplies. For another, abruptly changing or stopping the dosage of medications can make things much worse.
In researching Topamax to tell this story I discovered that the risk of seizures and psychosis greatly increases when you abruptly end the medication. This explains why my mania, paranoia, and anxiety continued even after I stopped. I would go through most of my day in a fugue state: outwardly o.k., but inwardly a roiling mess of ups and downs. One day, however, I cracked again. A coworker found me under my desk, crying without knowing why.
I talked to my doctor shortly thereafter: he made sure that I was not suicidal, and then he informed me that I would have to wait for my system to flush it out on its own. Since I had already decided to stop without consulting him beforehand there wasn’t anything he could do to lessen the side effects of withdrawal.
Eventually the mania subsided, and my body stopped feeling like a cage. I was able to vocalize what had happened to my doctor and my loved ones with greater clarity, and to better understand the severity of my reactions. While not entirely migraine free, I have been able to manage without the need for prescription medication for a few years. I approach prescriptions more cautiously now, in particular those with the potential to generate extreme psychological effects. I research and consult with multiple providers, explaining my history, and am careful to track my emotions and metal states when I start any new medication. Often I forego prescriptions altogether. I realize that there are people who do not have that luxury, and for whom prescription treatments have immeasurably improved quality of life. I understand that for many folks, finding the right medication and dosage is a journey that can involve trial and tribulation. I hope it never involves your medication making you feel psychotic. We often assume that we couldn’t possibly be the ‘rare and severe’ case, but the truth of the matter is: it could be anyone.