Psychiatrists Need to Be More Honest About Medication Side Effects
I was fortunate enough to go to therapy with a lovely group of people. We were all so cautious and scared when we first met, sitting awkwardly in a circle on our little plastic chairs. But our weekly meetings became important to all of us, a time when we not only learned and critiqued new ways of dealing with our problems but unloaded our weekly woes. We became aware of each other’s lives in an intimate way: “How are the in-laws this week?” “Did you talk to her about such and such?”
One person was very closely in touch with online mental health forums and every week they eagerly shared tips and advice from their online contacts. I have to say, I wondered whether they were really doing the right thing. There was a lot of pretty extreme advice, some of it from people who themselves sounded extremely unwell. Hostility to mental health practitioners was common.
When I went exploring for myself it was very much as I imagined, good and bad. One theme resonated with me in particular: medication. Some in the mental health community are strongly opposed to medicating mental illness. Opinion ranges from a fairly moderate view that medication doesn’t treat the root cause of mental illness to full blown conspiracy theories claiming that psychiatrists are deliberately doping people.
They say medicine is an art, not a science, and this is certainly true of medicating mental health conditions. By altering the action of the brain, psychiatric medication can influence personality. I’ve taken drugs that drained all the color out of my life, drugs that rendered me too sleepy to have a personality and drugs that seemed to sever me from certain of my spiritual perceptions. It is hard, as someone who has been medicated for fully half their life, not to wonder from time to time who you would be without the pills you swallow every day.
For years I was stuck in a cycle of giving up mental health meds because I was “better.” I usually did it in the very worst way, by stopping cold turkey, and wound up back at the doctor’s office a whimpering mess a month later. As a result, I take my prescribed medication, and if a healthcare professional advises you to do so too then I recommend following their advice. I’ve come to see medication as a platform. At my first psychiatric appointment I was in considerable distress, as I think it’s fair to say most patients are. Medication should mitigate some of that distress, creating a stable base from which the deeper causes and triggers of mental illness can be understood through talking and behavioral therapies. All too often I’m afraid medical practitioners fail to move past the medication stage. Here in the U.K., the massive burden placed on our mental health service by the Conservative government is at least partially responsible. Whatever the cause, the result is a spiral of poor long-term mental health care, in which hastily stabilized patients aren’t enabled to address the root causes of their illness.
The trouble is, that as time goes on, I come to empathize more and more with those who are losing faith with the psychiatric profession and throwing away their prescriptions. Looking back at 13 years under the care of NHS mental health teams I can trace a pattern of half-truths, partial information and in some cases outright lies regarding medication.
After I attempted suicide aged 19 I was prescribed the maximum dose of an antipsychotic. The effect was startling. I have never experienced sedation like it. I remember reeling as I tried to climb the stairs to bed, my husband and roommate catching me as I stumbled backwards and hauling me up between them. For two months I spent most of my time unconscious. I was barely capable of coherent conversation and a thick fog hung over my thinking. I told my psychiatrist that putting me into a permeant state of stupor was not a reasonable way to treat my unstable mood, even if I was at risk of suicide. I was taken off the drug.
But here’s the thing: I couldn’t sleep anymore. I haven’t fallen asleep naturally for 10 years now. I take my medication around 11 o’clock at night and an hour and a half later I fall unconscious, just like that. Ten years on and I am still taking that antipsychotic, not because it proved to be an effective mood stabilizer, not because it improves my health in any way, but simply because I am physically incapable of sleep without it. And if, for whatever reason, I am forced to miss a dose? Bone deep physical weariness accompanied by a complete inability to sleep are the least of the withdrawal effects. Sweating, itching, shaking, nausea, paranoia, a dreadful weakness and dissociation akin to an out-of-body experience. It is as though my internal monologue has been turned up to maximum volume and there is simply no way to turn it down.
Why, I asked my psychiatrist, was I not warned of these potential side effects? Why was it never mentioned that this drug could cause severe physical withdrawal? I was informed, have been informed by a string of mental health specialists, that there is no medical evidence that these kinds of withdrawals exists and that I certainly couldn’t be suffering such severe effects after missing one dose. In terms of the medical literature this does indeed seem to be the case. I can find only one paper acknowledging withdrawal from this medication in a case of schizophrenia.
But the most cursory Google search reveals a tidal wave of anecdotal evidence of patients suffering debilitating side effects from withdrawal from this medication. It is common knowledge among informed patients that it is one of the hardest antipsychotics to give up and that the longer you have been taking it the more difficult it will be to stop. No one told me that before it was prescribed. In fact, when I questioned the withdrawal symptoms I was told I must be imagining things.
Similarly, I had been taking an epilepsy drug for about two years when I began to shake uncontrollably. The slight nervous tremor I used to get when I was anxious had become a permeant trembling that made it difficult to carry a drink across a room. When I spoke to my psychiatrist I was told immediately, casually even, that it was a side effect of the drug I was on. Another medication could be prescribed which would stop the shaking. When I asked if the side effect would go away if I stopped taking the medication my psychiatrist shrugged. When I asked why I had never been advised that this was a potential side effect they shrugged again. I started taking the new drug, adding it to the five other drugs that I take on a daily basis, and the shaking abated. It comes back in force if I miss a single dose. Again, Google abounds with cases of patients experiencing the problem. It is particularly baffling that this potential side effect was never mentioned because the epilepsy drug I’m on is notorious for causing severe birth defects. Its prescription to a woman my age is accompanied by chapter and verse about the dangerous side effects of becoming pregnant while taking it. But until I arrived in the psychiatrist’s office physically shaking, not a word about the possibility of severe tremors.
I recently asked a pharmacist why I, and I suspect many, many others, are often not warned about the long-term side effects of the mental health medication we are prescribed. I was told that my doctors were probably so desperate to make me feel better that they did not want to discourage me from taking the medication I needed. That is a charming and ethically bankrupt statement that dispenses entirely with informed patient consent. I heartily recognize the difficult decisions faced by psychiatric practitioners when severely ill patients arrive in their office, often posing a threat to their own lives. My heart goes out to an NHS so chronically underfunded that, as one weary therapist confided to me, there are areas where two or three psychiatrists are responsible for the care of thousands of people. But we cannot take away informed patient choice. By doing so, therapists play into the hands of online crusaders who argue that mental health medication is unnecessary and mental health professionals are evil pill-peddlers.
It is not difficult to become disillusioned when you realize that you have been lied to, no matter how well intentioned the deceit. It is difficult to trust the advice of someone who has misled you into a decision that will negatively affect your health forever. Psychiatric patients already make incredibly difficult decisions about which aspects of their personality are a fair trade off for a more stable existence. It is only ethical that they are treated like responsible adults and made aware of all the consequences when choosing a medication regime.
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