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The Guardian - UK
The Guardian - UK
Lifestyle
Sophie Knight

My adult ADHD drugs felt like a lifeline. Then came the scary side-effects …

An illustration of tablets and pills scattered in front of an out-of-focus image of a woman in a chair

At first being diagnosed with ADHD came as a relief. I cried in the psychiatrist’s office: maybe I wasn’t lazy after all. He gave me pills that, within days, offered me a glimpse of what I thought a neurotypical person’s brain might feel like: focused and smooth, like a game of leisurely tennis rather than a ball machine going berserk.

Dexamphetamine felt like a silver bullet. Suddenly I could plan ahead, follow entire meetings, and pack a bag without having a nervous breakdown. Gone was the constantly harried feeling that had bullied me into perpetual motion for most of my 34 years. There seemed to be more time in each second to listen, absorb and think. I no longer wanted to punch people in the back of the head when they were blocking my way in the supermarket.

But after a year on stimulants, things began to unravel. I had constant migraine-like headaches, and was anxious and impatient. When I decided to quit, I was mired in lethargy and mental confusion that lingered far longer than the supposed “withdrawal” window. Had I always felt this foggy before the drugs? Or was it the drugs?

***

I had been a restless child. The first night I slept in a bed rather than a cot, I rolled on to the floor nine times. Even before I could walk, I was constantly wriggling, fidgeting, climbing things. My parents nicknamed me Tigger, after the perpetually bouncy Winnie-the-Pooh character. “You were cute and charming – but very annoying,” my mother recalls.

Still, the idea that I might have ADHD never came up. In the UK in the 90s, it was cast as a disorder of naughty boys who struggled at school. I was socially adept and academically successful – gifted, even.

I drove myself regularly to exhaustion as a teenager, but it was only once I left home to go to university in London that things really began to fall apart. Without the structure of regular mealtimes and bedtimes, my rhythms became erratic. I couldn’t sit still and study unless I was physically exhausted. I set myself unrealistic goals and took on too much: training for a half-marathon, two part-time jobs, a rule that I couldn’t eat anything I hadn’t cooked myself. After frantic waitressing shifts and studying benders, I drank to get to sleep.

With a brain like mine, you’re always “on”: a torrent of thoughts and sensations come in like spray from a fire hydrant, and you’re left desperately trying to stem the flow. Even when sick, I feel like I’m being driven by a piston engine, pushing me to move even though my muscles are worn out and my mind is begging for peace.

Certain requirements for being an active member of society – and an employee – eluded me: a regular sleep rhythm, for one, as well as consistency and an ability to conserve energy for big events or tasks. It didn’t matter how many habits I tried to build, or “hacks” I adopted. I still oscillated between being manic, sleepless and obsessive or catatonic, blinded by brain fog and exhausted, physically and mentally.

My career in journalism and research has been characterised by the same boom-and-bust cycle: I get a job, throw myself into it, and then burn out so badly I can’t work for months. After a stint in Japan, I moved to the Netherlands in 2015, hoping for a quieter life. But even on a four-day work week as a researcher, I ended up running myself into the ground again. I went freelance.

It was while I was languishing in yet another burnout in late 2020 that a friend sent me an article about women with ADHD eluding diagnosis until late in life. I used to be sceptical of ADHD as a diagnosable disorder, as well as the idea of doling out stimulants to supposed sufferers. In 2014, when a therapist first suggested I might have ADHD, I wrote to a friend: “I’m upset and angry to think that someone who just has energy and the will to move is labelled as sick.” But every word of the article had resonated. I resolved to go for a diagnosis.

I wasn’t alone: referrals for adult ADHD assessment skyrocketed during the pandemic. Psychiatry-UK, a private company contracted by the NHS, recorded a quadrupling of referrals between 2020 and 2022 compared with the two previous years. And even before Covid, prescriptions of stimulants for ADHD had soared: a record 161,584 adults were given medication in 2021, an increase of more than 50% from 2015.

***

The psychiatrist started me on Ritalin at first. During the early weeks, it seemed to fix … everything. Because I had to take my pills with food, and they wore off every four hours, I began eating meals at regular times. I even slept better, because I no longer needed to drink coffee. My hypersensitivity to light, noise and sensation faded away: clothes labels no longer bothered me to distraction. The sense of frustration and impatience just dried up. I felt like I was peacefully moving through the world, doing one thing at a time, able to focus on what was important rather than trivial tasks.

“Sounds great,” said my psychiatrist on our first check-in call. I brought up the downsides: insomnia, rapid heartbeat. “The side-effects will diminish, as long as you take it on a regular schedule every day,” he reassured me.

The amount of work I got done on Ritalin – and the calm it brought – was impressive. But the hyperfocus could be scary. The singular piercing beam of attention it created would latch on to whatever I was looking at, then refuse to let go for the next few hours. I could be in the middle of a dull WhatsApp conversation, but I just couldn’t tear myself away. If my ceiling had caved in, I would have put off fixing it until later.

Ritalin also made me depressed. One day I texted a friend: “I feel emotionally dark. Uneasy. Not looking forward to anything. Everything feels really grey. Been pacing the apartment.” It also made my heart race – once, I had a heart rate of 110bpm while doing the washing up. I asked to switch to another medication.

Dexamphetamine felt gentler: the beam of attention was more diffuse, cloaking distractions in shadow but allowing me to move from one task to another. Best of all, I didn’t feel depressed. Shortly after starting on dexamphetamine, I landed a commission for an ambitious article, and an intense full-time research project. I started working long days, marvelling at my focus and ability to ignore domestic distractions. I felt productive and efficient, finally able to work like other people. I want to be on this forever, I thought.

One day, a friend’s boyfriend saw me take my pills, and asked what they were. I told him, but before I could describe all the benefits I’d experienced, he launched into a tirade about how ADHD was a disease of modern society, how technology had shortened our attention spans, and how I just needed to train my focus.

“Have you tried juggling?” he asked.

I walked out flushed, angry and upset. My diagnosis had given me an explanation for why things felt so difficult, why I felt so stressed all the time, why I couldn’t turn glimmers of promise into consistent effort. Why my emotions felt so intense and all-consuming, why I had such low self-esteem and why, unlike all my friends, I’d never been able to stay in a job.

The diagnosis had quietened the cruel inner voice that told me these problems were personal failings, caused by a lack of effort or tenacity. Anyone who tried to tell me that ADHD was made up and that the medication was a big pharma con raised my hackles, because they seemed to imply that my initial conviction was correct: I was lazy and inept, and just needed to try harder.

I felt like I’d spent my whole life trying harder. I’d tried meditation, acupuncture, time-management strategies, working offline, running, handstands, cognitive behavioural therapy, cold showers, blue-light-blocking glasses … nothing even came close to medication.

***

Still, I couldn’t deny that the side-effects were miserable. There was the dry mouth, the relentless thirst, the burning tongue. I was constantly parched, and pissing like a racehorse. Food just seemed to pass straight through me. I lost 4kg, revealing the contours of my ribs.

“You can’t blame this on the medication,” said my psychiatrist sternly when I told him. “Yes, reduced appetite is a side-effect, but it’s your responsibility to eat more and to regain that weight.” I tried eating more chocolate, more butter, fewer vegetables. Pastries for lunch. But food wasn’t interesting. It had become fuel.

Managing two intense projects at once, which had seemed so magically possible for the first few weeks, began to take its toll. When I was working, I felt sharp and motivated; the rest of the time, I felt strung out and empty.

Worst of all were the rebounds. Dexamphetamine seemed to work by gathering the shimmering strands of my scattered attention and focusing them into a laser beam. But when it wore off, the strands would come loose again, bouncing like a dropped box of toothpicks. I’d get a migraine-like headache that made me confused and unable to follow conversations, listen to music, or think straight. It hurt to look at things. I became hypersensitive to sound. Some days, I’d be reduced to lying in bed with earplugs and an eye mask.

“Try taking another dose later in the day,” my psychiatrist suggested. “Some people find that they can avoid the rebound by timing it with when they go to sleep.” But upping my dose just stole my appetite for dinner, and kept me awake at night.

The rebound was worse on the days before my period. My psychiatrist admitted he didn’t know much about the interaction between medication and hormones, but he did send me a presentation showing that women with ADHD are far more likely to suffer with PMT, premenstrual dysphoric disorder (PMDD), and postnatal depression. Some women, the presentation said, benefit from increasing their dose in the week before their period. But that just made me feel spun-out, and made the rebound more acute. I decided to stop taking it on the worst days of my cycle, even if that meant I couldn’t get any work done at all.

By spring this year, I was taking weekends, days, or even whole weeks off the drugs at a time. (My psychiatrist had advised against this, but some prescribers say “drug holidays” do no harm, or can even be beneficial, allowing the heart and kidneys a break and preventing desensitisation). But I felt so foggy and lethargic from the withdrawal, I would end up just going back to the pills.

I had thought I might be on the medication for the rest of my life. But now, I started fearing that I was causing myself some kind of long-term damage. If I felt worse on days when I didn’t take the pills – worse than I did before medication – had I actually damaged my body’s ability to feel OK?

***

My psychiatrist had assured me the medication was safe, backed up by decades of clinical research. But when I went digging for scientific papers, I found that there is precious little evidence of how dexamphetamine and methylphenidate (the generic name for Ritalin) may affect the brain, heart, liver and kidneys when taken for years.

Most research has been done on children, and the longitudinal studies looked at behavioural outcomes and quality of life rather than neurobiology. Research done on children taking methylphenidate shows that it can actually help their brains grow in a way conducive to improved focus, even if the child stopped taking it. But the research did not find the same effect in the brains of people who began taking methylphenidate as adults.

While there is evidence from autopsies of addicts’ brains that chronic amphetamine abuse can induce permanent brain damage, hardly any research has been done into how dexamphetamine – which is chemically different from the amphetamines sold on the street – affects the brain over the long-term when taken at a prescription dose. Such a posthumous study into dexamphetamine has, however, been done on primates. It showed that prescription-level doses damage the brain’s system for delivering dopamine, further exacerbating the very imbalance supposedly responsible for ADHD in the first place.

It’s not clear what that means for humans. But some psychiatrists think the long-term consequences could be significant, and that stimulant medications are vastly overprescribed considering the potential risks.

Joanna Moncrieff, a professor in psychiatry at University College London, has spent her career challenging what she sees as the overuse of psychoactive drugs to treat mental disorders. Moncrieff, who recently published a controversial review paper stating that there was a lack of evidence for depression being caused by low levels of serotonin, does not believe ADHD is caused by an impaired dopamine system in the brain.

“All mental disorders are no more than clusters of symptoms; that is, clusters of behaviours or problems that people describe. There is no definitive link with biochemical abnormality,” she says. “ADHD drugs merely induce an abnormal state that alters the expression of symptoms.”

While I don’t agree with all of Moncrieff’s views – she believes that adult ADHD doesn’t exist and has been cooked up by pharmaceutical companies and embraced by perfectionists who want to become superhuman – some of what she says resonates. These pills don’t “normalise” my brain any more than sedatives “normalise” a person in the throes of psychosis. They induce a certain state that sometimes feels helpful – but do I want to stay in that state for ever, with all the short-term side-effects as well as the potential for unknown long-term consequences?

***

In March, I resolved to quit. I told everyone that this time it was for good. I hunkered down to weather the exhaustion and listlessness of withdrawal. My muscles ached; my head felt like it was stuffed with cotton wool. Just a few days of this, I told myself.

But it didn’t entirely go away. I was behind at work, struggling to make sense of my list of tasks. I had a video call about a potential project, but it was as if everyone was speaking in Greek. I wrote notes in the hope that it might help me understand what was happening but, while my hand was moving, no information was coming in.

After a week, I’d had enough. “Maybe just a little,” I thought, breaking a pill in half.

An hour later, I felt a hushed calm descending, like snow falling on a fire. The muscle pain that had blared like a klaxon in my head for the past few days hovered quietly somewhere in the distance. I started to write, and the words poured out effortlessly. I marvelled: this magical feeling, with just a third of my prescribed dose?

The next day, of course, I took the same amount. It felt less magical, but still preferable to my unmedicated state. I began taking the pills as needed, rather than on the regular schedule that my psychiatrist had urged me to adhere to, and in far smaller doses than I’d been prescribed.

Still searching for ways to reduce the headaches and rebounds, and having exhausted my psychiatrist’s suggestions, I found a post on Reddit that suggested letting the tablets dissolve under my tongue instead of swallowing them. Intrigued, I dug for more, and ended up on the Reddit forum for “tweakers”, or people who take amphetamines as “smart drugs”, to improve their cognition and efficiency. Trawling through their posts, I saw people going through precisely the same struggle as I was: loving what the drug made them capable of, struggling with its side-effects, and trying to find a way they could keep taking it without ruining their lives.

I began to worry that I was behaving like a speed addict. I kept telling everyone that I was getting off the drugs but, the next day, the craving burned so strongly I snuck back to get my fix.

***

During my assessment, my psychiatrist asked whether I’d ever taken speed. “Some people with ADHD find that when they’ve taken ecstasy or speed, they experience the opposite effect to what most people experience: it calms them down rather than making them energetic,” he explained.

Having never tried illicit amphetamine, I couldn’t relate. But a year and a half later, in May this year, I decided to try it while clubbing in Berlin. Before going, I took our stash of drugs to a drug-testing centre in Amsterdam, funded by the Dutch government. (They like to keep an eye on drug purity, as well as prices and market trends). I asked the tester the difference between dexamphetamine and street amphetamine.

She explained that street amphetamine adheres less strongly to the brain’s dopamine receptors than stimulants for ADHD – giving more of an “up” feeling and less of the calm concentration. “Also,” she added, “it’s likely you’ve just got a higher tolerance for speed than other people. I’ve got ADHD and I’ve figured out I need to take more to get the same effect.”

I arrived in Berlin tired and achy, having taken the advice of another friend with ADHD to come off my medication for a few days beforehand to avoid overdosing or drug interactions. On the day of our big night out, I was in bed crying, suffering from a heavy headache and fatigue. But at 10pm, I did a line, just to see what would happen.

Speed, I discovered, made me feel confident, but not histrionically so. By the time we rocked up to the notorious techno club Berghain just before dawn, I had the requisite nonchalance for getting past the famously intimidating bouncers.

In the toilets, I talked to a girl who’d just emerged from a cubicle. “Sometimes, all you need is a big, fat line of speed,” she said, beaming. I told her about my dexamphetamine. “I’ve always wondered what it’s like to be on medication,” she said, enviously. “I’ve been diagnosed with ADHD, but my psychiatrist won’t give me a prescription because he says I do speed too often on the weekends.”

Once back from Berlin, the familiar exhaustion and headaches crept back. Dexamphetamine seemed to just make me tired. I wondered if amphetamine might work better – it had made me dance for hours, after all.

The nadir came when I took a bump of speed – tipped out of its little paper wrap, carefully stored in my freezer – instead of my own prescription, to try and feel some physical energy and to blast the fog out of my head. “Where does this end?” I asked myself.

Realising what a slippery slope I was on – and the stupidity of taking street amphetamines instead of medical-grade prescription pills – my experiment only lasted one day. But I couldn’t stop thinking about how pro-drug psychiatrists like to maintain an illusory boundary between ADHD medications and amphetamines sold on the street. Where is the line between prescription and recreational speed?

***

Relying on a stimulant to resolve your psychological distress is never going to solve everything. Not only do the side-effects mean that I don’t want to be on it every day and have to resort to old strategies – frantic cleaning missions of the house to procrastinate, meditation, blocking the internet, to-do lists, lots of walks – it also can’t give me the consistency I crave, nor the capacity to work eight-hour days without getting itchy and enraged. At some point, I have to accept that I might not fit society’s idea of productivity or normality – and that that’s OK.

Having ADHD means that, even more than the average person, you have to find out what makes you tick and pursue it – even if that changes weekly. The truth remains that the drugs do ameliorate the worst of my symptoms – and often, for me, in a way that feels necessary. There are days when I cannot get even half an hour of work done without medication. (That was also the case before the drugs.) Projects and pitches languish unfinished; this article would never have been written without dexamphetamine.

So, for now, I continue to make my deal with the devil. I can go days without the drugs, relishing my raucous, unmedicated mind – and then I’ll have days so chaotically foggy, so dangerously unproductive, that I risk losing clients, and I go back to the pills. One day, I tell myself, I’ll kick the drugs for good.

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