The Reality of Living With Treatment-Resistant Depression
Some people receive a diagnoses of major depressive disorder (MDD), a standard first line medication and a high level of remission within four to six weeks. For many others it is a trial an error to find the medication that provides them relief from their symptoms. And yet there is a far less frequently talked about category known as “refractory depression.” More commonly outside medical circles you hear it referred to as “treatment-resistant” depression. This is when things get complicated. No longer is it a matter of taking one or two antidepressants, or trying a few to find the right fit. Most clinicians will not label depression as being treatment-resistant until they have tried numerous types of antidepressants (SSRI, SNRI, tricylic, etc.), other pharmacological options (antipsychotics, mood stabilizers, anxiolytics, etc.) and lifestyle changes (therapy, diet, exercise, etc.). Only after exhausting a number of available options with little or no success does MDD become “refractory depression.”
I’m not sure at what point I crossed that invisible line in the last 12 years, because I found out completely by accident. When my psychiatrist sent a letter of referral for a neurology consult, he either didn’t expect me to find out, or assumed I already knew. Probably the latter after over a decade and at least 30 medications. So when the neurologist sat down, letter in hand, and mentioned I had “refractory depression,” the first thing I did when I got home was to look it up. I had no idea what it meant, but I soon found out it meant the hard work was just beginning.
I don’t just have difficulty finding medications that work — I am also more susceptible to negative side effects, as well as tending to have paradoxical reactions to them. Stimulants make me quiet and tired, sedatives make me panic, SSRIs make me suicidal… the list goes on. On top of which my anxiety disorder has been “treatment-resistant” for a long time, and the balancing act of taking medication for one condition without aggravating another is a never-ending struggle. Luckily I found a tough as nails psychiatrist who just doesn’t know how to give up. So when one thing doesn’t work, we try something else.
The more frightening side of refractory depression may be the high likelihood of “burnout.” Medications that do work can sometimes stop working. And since so few medications are even remotely successful, that means I can never feel settled or comfortable, because chances are we will have to keep increasing the dose until it reaches a dangerously high level, at which point we will have to switch to something else.
I’m a rapid metabolizer, and as it is I have to start out at the maximum safe dose of medications most times. For those without a strict upper limit, it becomes a matter of pushing the boundaries until the risks far out weight the benefit. Sometimes that means taking more than the typical “maximum” dose, and even then it will likely stop working.
The constant changes in medication can lead to side effects ranging from unpleasant and embarrassing, to flat out dangerous. Weight gain, loss of muscle tone, incontinence, dizziness, fainting, cardiac arrhythmia, seizures and so much more. But in some ways it is a small price to pay for a chance at even a tiny amount of relief from the agony of major depression. It’s a price I am willing to pay — most of the time.
The difficulty of treating refractory depression also makes compliance problematic. High doses, complicated schedules and numerous side effects — all for what can seem like virtually no benefit — makes it very easy to become noncompliant, and simply stop taking medication, or stop taking them the way I am supposed to. At times I have been on multiple medications, that I had to take multiple times a day. Alarms on my phone would constantly go off reminding me I had to swallow yet another cocktail of semi-useless pharmaceuticals. But other times I have taken very few medications twice a day, with great success. It’s unpredictable. It’s always changing. It’s discouraging and tiring, and it is never-ending.
It has taken time to come to a level of acceptance about it. I will never be someone who can take a pill and everything is better. It will never be that simple for me. I will never just pop in to my doctor’s office every six months for a refill, because nothing is going to go well for that long. I will always be balancing the long list of side effects with the possibility or relief, and trying to determine at what point it is time to try something else. Sometimes I lose hope, and feel like nothing will ever be OK. But fortunately, when things get bad, my psychiatrist reminds me of something he has observed over the years, “You are not a quitter.”
He’s right, I’m not. So no matter what, I will never quit — because refractory depression may be here to stay, but that doesn’t mean I have to settle for living life on its terms.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.
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Thinkstock photo via Cattalina