The agony of opioid withdrawal — and what doctors should tell patients about it | Travis Rieder

"How much pain medication are you taking?" That was the very routine question that changed my life. It was July 2015, about two months after I nearly lost my foot in a serious motorcycle accident. So I was back in my orthopedic surgeon's office for yet another follow-up appointment. I looked at my wife, Sadiye; we did some calculating. "About 115 milligrams oxycodone," I responded. "Maybe more." I was nonchalant, having given this information to many doctors many times before, but this time was different. My doctor turned serious and he looked at me and said, "Travis, that's a lot of opioids. You need to think about getting off the meds now." In two months of escalating prescriptions, this was the first time that anyone had expressed concern. Indeed, this was the first real conversation I'd had about my opioid therapy, period. I had been given no warnings, no counseling, no plan... just lots and lots of prescriptions. What happened next really came to define my entire experience of medical trauma. I was given what I now know is a much too aggressive tapering regimen, according to which I divided my medication into four doses, dropping one each week over the course of the month. The result is that I was launched into acute opioid withdrawal. The result, put another way, was hell. The early stages of withdrawal feel a lot like a bad case of the flu.

I became nauseated, lost my appetite, I ached everywhere, had increased pain in my rather mangled foot; I developed trouble sleeping due to a general feeling of restlessness. At the time, I thought this was all pretty miserable. That's because I didn't know what was coming.

At the beginning of week two, my life got much worse. As the symptoms dialed up in intensity, my internal thermostat seemed to go haywire. I would sweat profusely almost constantly, and yet if I managed to get myself out into the hot August sun, I might look down and find myself covered in goosebumps. The restlessness that had made sleep difficult during that first week now turned into what I came to think of as the withdrawal feeling. It was a deep sense of jitters that would keep me twitching. It made sleep nearly impossible. But perhaps the most disturbing was the crying. I would find myself with tears coming on for seemingly no reason and with no warning. At the time they felt like a neural misfire, similar to the goosebumps. Sadiye became concerned, and she called the prescribing doctor who very helpfully advised lots of fluids for the nausea. When she pushed him and said, "You know, he's really quite badly off," the doctor responded, "Well, if it's that bad, he can just go back to his previous dose for a little while." "And then what?" I wondered. "Try again later," he responded. Now, there's no way that I was going to go back on my previous dose unless I had a better plan for making it through the withdrawal next time. And so we stuck to riding it out and dropped another dose.

At the beginning of week three, my world got very dark. I basically stopped eating, and I barely slept at all thanks to the jitters that would keep me writhing all night. But the worst -- the worst was the depression. The tears that had felt like a misfire before now felt meaningful. Several times a day I would get that welling in my chest where you know the tears are coming, but I couldn't stop them and with them came desperation and hopelessness. I began to believe that I would never recover either from the accident or from the withdrawal. Sadiye got back on the phone with the prescriber and this time he recommended that we contact our pain management team from the last hospitalization. That sounded like a great idea, so we did that immediately, and we were shocked when nobody would speak with us. The receptionist who answered the phone advised us that the pain management team provides an inpatient service; although they prescribe opioids to get pain under control, they do not oversee tapering and withdrawal. Furious, we called the prescriber back and begged him for anything -- anything that could help me -- but instead he apologized, saying that he was out of his depth. "Look," he told us, "my initial advice to you is clearly bad, so my official recommendation is that Travis go back on the medication until he can find someone more competent to wean him off." Of course I wanted to go back on the medication. I was in agony. But I believed that if I saved myself from the withdrawal with the drugs that I would never be free of them, and so we buckled ourselves in, and I dropped the last dose.

As my brain experienced life without prescription opioids for the first time in months, I thought I would die. I assumed I would die -- (Crying) I'm sorry. (Crying) Because if the symptoms didn't kill me outright, I'd kill myself. And I know that sounds dramatic, because to me, standing up here years later, whole and healthy -- to me, it sounds dramatic. But I believed it to my core because I no longer had any hope that I would be normal again. The insomnia became unbearable and after two days with virtually no sleep, I spent a whole night on the floor of our basement bathroom. I alternated between cooling my feverish head against the ceramic tiles and trying violently to throw up despite not having eaten anything in days. When Sadiye found me at the end of the night she was horrified, and we got back on the phone. We called everyone. We called surgeons and pain docs and general practitioners -- anyone we could find on the internet, and not a single one of them would help me. The few that we could speak with on the phone advised us to go back on the medication. An independent pain management clinic said that they prescribe opioids but they don't oversee tapering or withdrawal. When my desperation was clearly coming through my voice, much as it is now, the receptionist took a deep breath and said, "Mr. Rieder, it sounds like perhaps what you need is a rehab facility or a methadone clinic." I didn't know any better at the time, so I took her advice. I hung up and I started calling those places, but it took me virtually no time at all to discover that many of these facilities are geared towards those battling long-term substance use disorder. In the case of opioids, this often involves precisely not weaning the patient off the medication, but transitioning them onto the safer, longer-acting opioids: methadone or buprenorphine for maintenance treatment. In addition, everywhere I called had an extensive waiting list. I was simply not the kind of patient they were designed to see. After being turned away from a rehab facility, I finally admitted defeat. I was broken and beaten, and I couldn't do it anymore. So I told Sadiye that I was going back on the medication. I would start with the lowest dose possible, and I would take only as much as I absolutely needed to escape the most crippling effects of the withdrawal. So that night she helped me up the stairs and for the first time in weeks I actually went to bed. I took the little orange prescription bottle, I set it on my nightstand... and then I didn't touch it. I fell asleep, I slept through the night and when I woke up, the most severe symptoms had abated dramatically. I'd made it out. (Applause) Thanks for that, that was my response, too. (Laughter) So -- I'm sorry, I have to gather myself just a little bit. I think this story is important. It's not because I think I'm special. This story is important precisely because I'm not special; because nothing that happened to me was all that unique. My dependence on opioids was entirely predictable given the amount that I was prescribed and the duration for which I was prescribed it. Dependence is simply the brain's natural response to an opioid-rich environment and so there was every reason to think that from the beginning, I would need a supervised, well-formed tapering plan, but our health care system seemingly hasn't decided who's responsible for patients like me. The prescribers saw me as a complex patient needing specialized care, probably from pain medicine. The pain docs saw their job as getting pain under control and when I couldn't get off the medication, they saw me as the purview of addiction medicine. But addiction medicine is overstressed and focused on those suffering from long-term substance use disorder. In short, I was prescribed a drug that needed long-term management and then I wasn't given that management, and it wasn't even clear whose job such management was. This is a recipe for disaster and any such disaster would be interesting and worth talking about -- probably worth a TED Talk -- but the failure of opioid tapering is a particular concern at this moment in America because we are in the midst of an epidemic in which 33,000 people died from overdose in 2015. Nearly half of those deaths involved prescription opioids. The medical community has in fact started to react to this crisis, but much of their response has involved trying to prescribe fewer pills -- and absolutely, that's going to be important. So for instance, we're now gaining evidence that American physicians often prescribe medication even when it's not necessary in the case of opioids. And even when opioids are called for, they often prescribe much more than is needed. These sorts of considerations help to explain why America, despite accounting for only five percent of the global population, consumes nearly 70 percent of the total global opioid supply. But focusing only on the rate of prescribing risks overlooking two crucially important points. The first is that opioids just are and will continue to be important pain therapies. As somebody who has had severe, real, long-lasting pain, I can assure you these medications can make life worth living. And second: we can still fight the epidemic while judiciously prescribing opioids to people who really need them by requiring that doctors properly manage the pills that they do prescribe. So for instance, go back to the tapering regimen that I was given. Is it reasonable to expect that any physician who prescribes opioids knows that is too aggressive? Well, after I initially published my story in an academic journal, someone from the CDC sent me their pocket guide for tapering opioids. This is a four-page document, and most of it's pictures. In it, they teach physicians how to taper opioids in the easier cases, and one of the their recommendations is that you never start at more than a 10 percent dose reduction per week. If my physician had given me that plan, my taper would have taken several months instead of a few weeks. I'm sure it wouldn't have been easy. It probably would have been pretty uncomfortable, but maybe it wouldn't have been hell. And that seems like the kind of information that someone who prescribes this medication ought to have. In closing, I need to say that properly managing prescribed opioids will not by itself solve the crisis. America's epidemic is far bigger than that, but when a medication is responsible for tens of thousands of deaths a year, reckless management of that medication is indefensible. Helping opioid therapy patients to get off the medication that they were prescribed may not be a complete solution to our epidemic, but it would clearly constitute progress. Thank you. (Applause)