At the end of my first week using gabapentin, I awoke butt naked, face down, in a diamanté choker. The night before, I’d been celebrating a friend’s birthday in the secret lounge above a wood-panelled strip club in east London. The party was full of ladies holding apples and wrapped in live snakes. “It feels like a party one of the Kennedys would have been photographed at,” I texted my boyfriend.
While a lot was unusual about the evening, strangest of all was the fact I had been in attendance. For the entire year before, I’d barely been able to function, crashing into out-of-body experience and paralysis with so much pain and fatigue that I had to drop out of university to attend a physical rehabilitation programme. The entire act of attending a party, and casually falling asleep afterwards, was alien to me.
I was prescribed gabapentin in 2013, as an inpatient at a sleep clinic. My consultant observed that I was waking 17 times an hour and diagnosed neuropathic pain, a side effect of my many other musculoskeletal conditions. Apparently the hallucinations and paralysis I was experiencing are common side effects of extreme sleep deprivation. The consultant told me that the medication was usually used to treat epilepsy and that I was being offered an off-label usage, emphasising that it might not work – and if it did, we wouldn’t know why.
Within weeks of taking gabapentin, my hallucinations and paralysis had settled down. A strange side effect was that I stopped having to stretch my legs excessively before bed. Previously, I’d required between one to three hours of physiotherapy to ease the cramping.
Beyond partying, by the end of 2013 my newfound energy allowed me to return to university for two more years. But I also learned that gabapentin was not a drug to be messed with. The first time I missed a dose, I woke at 4AM, sweating profusely, hallucinating little spiders running over my skin. To avoid withdrawal, I made sure I always had several additional months’ worth of prescription in my cupboard. During uni, when I found my fatigue increasing, I wondered if it might be the old restless legs playing up again. A doctor gave the OK for me to increase my gabapentin dosage to 900mg from 600mg. After all, I’d initially been told it was harmless.
Shayla Love’s 2019 VICE article about the gabapentinoid scandal sent ripples of shock through the sick and disabled community. “GABAPENTIN IS A PLACEBO AND IT’S DANGEROUS,” one of my friends posted on Facebook. “Be careful out there.”
The article details the manner in which gabapentinoids – anticonvulsant medications such as pregabalin and gabapentin – had been aggressively marketed as an off-label treatment for multiple hard-to-treat and poorly researched conditions, including chronic pain, anxiety and phantom limb syndrome. In most cases, there was little clinical evidence to suggest that the drugs provided any medical advantage. In some trials, they were less effective than placebo. Worse still, they had been connected to higher risk of death, suicidality and opioid misuse (gabapentinoids proved popular among heroin users, due to their ability to increase highs and make the lows more manageable).
Meanwhile, deaths in the UK attributed to gabapentinoids had increased dramatically – particularly among prison populations – jumping from tens to hundreds in the six years between 2012 and 2018. Just a few months before I was aware of any potential harm, they had been urgently upgraded to a controlled class 3 substance in the UK, meaning tighter prescription regulations. NHS guidance stated in bold: “It is not helpful or appropriate for anyone to stockpile these medications.”
In the wake of this news, I found myself questioning my use of gabapentin. Was my initial energy due to finally sleeping through the night, or was it simply the drug’s euphoric side effects? It was possible, but my late-night googling also suggested that gabapentinoids might have a positive impact on my particular brand of nerve pain, and that alternative treatment options were limited. It seemed to have helped – it had changed my life – and I didn’t know what else to do.
The medical community was also reacting to the drug’s updated profile. A new GP approached my prescription with an unexpected hostility. “If you want to keep on taking this medication, we’re not the surgery for you,” she said. When I explained the basis for my gabapentin use, she rolled her eyes. “It’s a prison drug. For all I know, you could be selling your medication to prisons.”
Rather than address the issue I was there to discuss, I ended up spending the best part of my appointment attempting to persuade her that I was a responsible patient, followed by two panicked weeks where I was unsure whether my repeat prescriptions would continue. Eventually, I was able to return to the surgery and discuss my situation with a more empathetic doctor, who honoured my prescription immediately and helped me consider a longer-term pain management strategy.
The gabapentinoid scandal is fuelled by a history of chronic pain patients being underserved. A 2017 New England Journal of Medicine article suggests that the increased prescription of gabapentinoids is a direct response to the opioid epidemic, with practitioners looking for a fast and effective alternative solution to chronic pain conditions, which can be complex and need time to manage. Chronic pain patients are often reminded that there’s no magic pill to completely cure a chronic pain condition, but it doesn’t feel like the medical system has caught up with this fact, or really addressed how it might change its procedures.
Recently, new NICE guidelines were issued to propose that doctors offer absolutely no pain relief medication to patients with chronic pain, instead advising treatments such as exercise, CBT and acupuncture. The guidance focuses on the risk of addiction, even with medications such as paracetamol and aspirin. Whilst these guidelines primarily focus on chronic pain without an “underlying condition”, it’s worth acknowledging how long it takes for pain to be taken seriously by a medical professional, how little funding or research there is into chronic pain, and how ill-equipped medical services are to deal with ongoing conditions.
Navigating pain is becoming an increasingly traumatic minefield, with doctors “correcting” their colleagues’ prescription choices in ways that punish the patient. In the US, 70 percent of respondents to a survey by Pain News Network reported that doctors had reduced or simply cut off their prescriptions, with reports of no withdrawal plan being offered. In response to the UK’s new NICE guidelines, a statement issued by the Faculty of Pain Medicine lists the risk of “the potential withdrawal of useful medications from patients by GPs” as one of their primary concerns.
Within a decade, gabapentinoid users like myself have had to adjust from having cupboards overflowing with too much medication, to being treated with suspicion and threat. No symptoms are improved by this experience of panic, stress and stigma.
The constant fear of having our bodies policed by medical professionals under constantly changing guidelines leads to so much mistrust in the patient/doctor relationship that we are more likely to end up making risky or unsafe decisions for ourselves with little oversight. Although gabapentinoids require a prescription, patients who are frantic and at risk of withdrawal are more likely to turn to fake and illegal versions, which are easily accessed online.
For my part, I’m well aware that gabapentin is far from a perfect drug. My brain is often very foggy, and it’s unclear if this is due to my strange body or the well-charted side effects of the medication. I am uncomfortable with my dependency and terrified of the consequences of stopping. The GP who threatened to turn me away from her surgery did not have a positive impact on my gabapentin usage, but requesting my prescription each month now provokes a spiral of anxiety, guilt and shame. I also still don’t really understand my alternative options.
Instead of the substantial medical research and funding we deserve, we are faced with a reality where every medical interaction we have is at the mercy of the crimes that came before us: a marketing scandal, overprescription, pills in lieu of adequate trauma therapy, all the way back to the still-too-common accusation that pain is a symptom of hysteria.
If medical practitioners want to help their chronic patients, and avoid becoming part of the next wave of scandal and repercussions, it is important to attempt to remove their biases: to offer patients a space where they are able to speak honestly about their present needs and experiences, time to review medication, ask questions and explore alternatives. In the long run, better funding for research and long-term treatment options is essential, but right now, the best way for doctors to support their chronically ill patients is through collaboration and dialogue: to offer them trust, and seek to earn it.
Abi Palmer is the author of Sanatorium, which explores hallucinations, rehab and the female body in pain.