I’m stuck on the ‘anxiety’ drug pregabalin

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Every morning when packing my bag, I feel around for the usual essentials. My phone, my keys, makeup, my wallet. But the first item to go in, and the very last I triple-check before leaving the house (and again, on the way to the bus stop), is a little white make-up bag emblazoned with a retro TWA airlines logo.

You know that feeling you have on the way to the airport, constantly making sure you have your passport? That’s me, every single day. At various times, I will fish around in my bag, heart racing until it’s calmed by the reassurance of touching the little case. It’s safe to say that the entire happiness of my day is underpinned by knowing I have it with me.

The TWA bag contains a small bottle of the liquid version of medication called pregabalin. If I forget to take it with me – or have otherwise neglected to take my ‘pregab’ by 8pm or so – I start to get withdrawal symptoms. Before the evening is out, I’ll be a sweaty, shaking, nauseous mess, with disabling pins and needles in my hands and feet. The longer I go without my dose – which is absolutely tiny these days – the more unpleasant these symptoms become. Patients have recently described these withdrawals as “hell on earth”, and oh I can relate.

Miranda’s essentials, including the white TWA bag that contains her bottle of pregabalin

As pregabalin is a relatively new drug, it has not been studied in great detail. “The existing knowledge about the discontinuation of pregabalin is limited,” says a 2018 study published in the National Library of Medicine. “However, the existing case studies suggest diaphoresis (sweating), tachycardia (fast heartbeat), hypertension, tremors, diarrhoea, agitation, paranoia, auditory hallucinations, mutism, self-mutilation, and suicidal attempt as common symptoms of pregabalin discontinuation. It is hypothesised that the mechanism of withdrawal symptoms of pregabalin is similar to benzodiazepine and ethanol.”

Pregabalin is an anti-seizure medication. At least, that’s what it was originally licensed for in 2004. Doctors later started to use it for neuropathic or nerve pain. Then, when their patients reported feeling calmer, doctors began offering Pregabalin “off-label” for “anxiety” – the reason I was originally prescribed it. It’s powerful, serious sh-t.

Perhaps unsurprisingly, in recent years, recreational drug users have discovered pregabalin, which is an increasing problem on the street, and in prisons.

Eight million people are on pregabalin. Now, new figures from the Office of National Statistics reveal that the result of people abusing it has led to nearly 3,400 deaths in the last five years, up from nine in 2012. In the UK, pregabalin is only behind opiates, benzodiazepines such as valium and cocaine, for the number of fatalities to which it is linked.

There is a huge irony to this, as pregabalin was originally introduced because doctors thought it to be a safer option to valium-type drugs. But highly-regarded psychiatrists, such as the campaigner Dr David Healy, are calling it “the new Xanax” and even “Valium on steroids” due to fears about crushing side effects including suicidal thoughts, and dependency. Valium and other “benzos” are well-known for causing such effects: their prescription is limited these days.

In 2019, pregabalin was classified as a class C controlled drug in a bid to limit repeat prescriptions.

But most people, Iike me, will have been prescribed pregabalin by their doctors, and will be taking it in the same good faith. How dismaying this all is to read.

My experience with pregabalin began in 2016. I was prescribed the drug by a consultant, six years after I embarked on what I like to call my ‘psychiatric safari’.

The psychiatric safari started in July 2010, after the sudden end of my marriage when I was 42. Perhaps unsurprisingly, I was thrown into a maelstrom of panic, sadness, and worry about my future as the single mother of two small children. My reaction to this was that I stopped being able to sleep. After a weekend of total insomnia, I went to see my GP, who barely looked up from his pad and wrote me a prescription of sleeping pills and antidepressants.

Arguably, psychiatric drugs were not the solution for a person going through acute and understandable emotional distress but, oh boy, drugs I got. Once I was properly in the NHS system and referred to a succession of psychiatrists, I was launched into an ever-changing and increasing roster of tranquillisers, sleeping pills, antidepressants, even antipsychotics at one point. Despite a gaggle of psychiatrists doubling and trebling the doses and combining many of them together, the drugs didn’t work. In fact, we were coming to the end of the options in the psychiatry textbook, when a new consultant suggested pregabalin, also known by its brand name Lyrica, which he said was newly being prescribed for anxiety.

By now I was so drained and depleted and desperate, I would have tried anything. But I clearly remember asking my consultant whether pregabalin had any side-effects, or problems with dependency or withdrawal. He said: “not at all.”

But in September 2019, Public Health England asked the government to help people whose lives have been blighted by five classes of prescription drugs. These included sleeping pills, antidepressants, and gabapentinoids (pregabalin is a gabapentinoid). The measures included plans for a 24-hour helpline, tougher guidelines on prescribing, and acknowledgement (for the first time) that withdrawal from these drugs can cause health problems. The helplines are yet to appear.

Now, some patients can come off pregabalin with few or minor problems, but I wasn’t to be one of them. My doctor and I agreed I would start on 250mg of the drug, a medium-sized dose.

Many people on pregabalin talk about enjoying a sense of euphoria or buzziness – presumably the reasons it has become popular on the street. I don’t recall having any such benefit: to me at the time, it was just another pill to take, and rattle around on.

A couple of years after starting on pregabalin, I slowly started to recover. There were several reasons for this, but it was chiefly due to the healing passage of time, and the fact that my living environment had become calmer and happier. My recovery was not because of the drugs I was taking – in fact, I’m fairly certain it was despite them. Their side-effects and withdrawals had had a serious role in keeping me ill, and making me sicker.

As I got better, I started to “taper” (slowly reduce) the drugs, eventually coming off most of them. But pregabalin worried me a bit. I went back to my consultant and we agreed on a plan for me to taper over the course of a year or so. The first part wasn’t so bad. I dropped one 25mg tablet every few months, stabilising in between dose-drops, with the aim of dropping to the smallest pill size.

And so far, so good, mostly. To begin with, at least, I avoided the worst withdrawal syndromes, and reentered the world.

For five years now, my life has been back on track. I resumed my work as a journalist, eventually getting a job at this newspaper. I have a lovely new partner, fixed my relationship with my children – which had suffered over that period – and bought a gorgeous new flat two years ago.

The only real shadow is the pregabalin and its withdrawals. A few years ago, I went to Bournemouth for the weekend with my family. At least, that was the plan. Upon unpacking my bag, I realised I had left my pregabalin at home. There was nothing to discuss. I kissed my children goodbye, turned around and headed for the train station back to London and my pill-drawer. My determination to get off this horrible regime redoubled.

Two years or so ago, I came to the smallest 25mg pill. Reading up on the subject, I knew I couldn’t just ‘jump off’ at this dose to zero, or I would suffer tremendously. So the next few months saw me opening up the capsules and separating out the white powder with a credit card, as if I was taking lines of cocaine. As one might imagine, this was messy and awkward and not ideal for an office environment.

Using advice from online patients’ groups, I persuaded my GP to prescribe me liquid pregabalin, so I could reduce my dose in smaller increments. And here, at the present day, is where I find myself, with my little bottle of pregabalin. It’s a lot easier to sip a small glug of liquid in the office loos than chop up several lines.

Over the past five years, I have made amazing progress: down from 250mg to a paltry 8mg. People might then ask me: why don’t you just stop altogether?

To them, I say: this is what happened the last time I tried. First came the pins and needles, closely followed by the sweating. Not so bad, you might think. But when you add to this the progression of unremitting nausea, retching, diarrhoea, jitteriness, dizziness so bad you can’t stand up and the feeling you’re about to die – well, it’s a hell of a lot easier to take a slug of sweet-tasting liquid which will make all of this go away in the space of several minutes.

For the last year or so, I’ve been ‘stuck’ on 8mg which is 0.2ml of liquid – about the size of half the top joint of your little finger. Reduce one tiny raindrop, and the tingling hands and feet begins. My newest tactic is to set up a chemistry lab in my kitchen. We are buying pharmacists’ scales, neonatal syringes and pipettes to dilute the pregabalin further, continuing my taper until there’s merely an atom of active ingredient, diluted in water. You never know, I may finally get off this stuff.

Reading this back, one could get the impression that I’m surprisingly upbeat about all this. It’s true that on the whole my days are cheerful. But if I really think about it, I am furious. I was put on a powerful drug at a point in my life where I was vulnerable and not in a position to be able to research it fully. I took the medication exactly as prescribed and never abused it. I don’t really like being lumped with ‘junkies’. As my doctor didn’t explain that any of this could happen, I don’t believe this counts as “informed consent”. Why do I need to suffer like this?

Perhaps most pressing is the worry of running out of pregabalin before I am ready to stop taking it. Hence, I am entirely in the thrall of my GP. So far, I have been lucky. My doctor (very kindly) prescribes me a pot of liquid pregabalin, which lasts me about a year. But what if I get a new doctor who reads the hysteria around the drug, and ‘cuts me off’. What if this week’s headlines make a difference? How ill would I become then? Who would help me?

One expert is describing the street trade of pregabalin as “selling a car without brakes”. Well, I hope the time will soon come that I can get out of this crazy vehicle, safe, and unharmed.

When we asked Pfizer about pregabalin they said:

“When prescribed and administered appropriately as per the approved label, Lyrica® (pregabalin) is an important and effective treatment option for many people living with chronic  neuropathic pain, generalised anxiety disorder and epilepsy.  The clinical effectiveness of this medicine has been demonstrated in a large number of robust clinical trials among thousands of patients living with these conditions. Patient safety is, and will always be, Pfizer’s utmost priority.  We work with regulatory authorities around the world to continuously evaluate and monitor safety for each and every Pfizer medicine through ongoing clinical research, analysis and surveillance.”

The Insomnia Diaries: How I Learned to Sleep Again by Miranda Levy is published by Octopus Books

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