This is what nobody tells you before you come off antidepressants

Until three months ago, I’d been taking anti-depressants for the best part of 25 years. When my supply ran out, I decided not to renew the prescription. I knew I was asking for trouble – but I had to try.

It seems the science may have caught up with me. According to a new study this week, scientists believe that antidepressants ought to be prescribed less routinely by doctors due to their myriad side effects. They may not be effective as widely believed, either, as the trial failed to establish any “clinically relevant” difference between patients given antidepressants and those given a placebo.

But coming off antidepressants is far easier said than done.

I’d tried several times over the years to come off whichever iteration of serotonin re-uptake inhibitors I’d been put on by my GP. The side-effects of withdrawal were horrible. I simply couldn’t do it.

After a day or two, I started becoming agitated, impatient. If I moved my head sideways, I’d get nauseating head rushes like a fuzzy electric shock was going through my brain. I’d given up smoking when I was 37 and it was nothing compared to this.

One evening, several weeks after giving up the antidepressants, I was sitting on the sofa watching TV when my mind was suddenly filled with the grotesque image of my feet turning black. I couldn’t get it out of my head. I caught myself in the mirror: I was involuntarily grimacing with horror and it made me feel physically sick. What the hell was happening to me? This lasted a full 20 minutes or so. All the while I just kept pleading with it to stop.

I didn’t say anything. I mean, that’s not something you want to say out loud – you don’t want to admit you’re capable of getting into that kind of state. And who wants, or indeed needs, to know that you’re feeling like that?!

These episodes have not been regular occurrences but I don’t remember ever having such a deep sense of uncontrollable anxiety or suffering such weirdness before I started taking the drugs or indeed while I was on them. Not taking the drugs had cast me in a rancid sideshow of withdrawal.

At other times I’ve found myself unable to concentrate properly on any task that required intense focus, or I’ve realised that I’d spent half an hour manically typing messages to work colleagues which barely made sense.

And I can only put that down to the void created by the absence of the drugs.

My GP assured me that I shouldn’t be too concerned about what he called the “cessation effects”, and that “nothing bad was going to happen”. But, still, these effects caused an internal panic and made the carrying out of ordinary activities – work, fun, exercise – virtually impossible. And every time, I capitulated and cracked open another blisterpack. “Think of it like taking a vitamin tablet every day, and just get on with it.”

But that’s no way to live your life, right? How do you really know if how you’re feeling is how you’re really feeling? I remember one time I’d been off the medication for a few days, singing along to one of my favourite songs in my car, and bursting into tears. I suddenly realised that I was hearing the music, feeling the music in a way I couldn’t when I was full of the drugs. Just a couple of days without taking them had re-opened an avenue of genuine pleasure that had hitherto been closed off. It didn’t mean I could ditch the antidepressants, but it did make me question whether I was actually experiencing life or if it had simply become some dumbed-down version of events.

And I was fully aware that I wasn’t taking antidepressants because I was depressed. I wasn’t depressed. I was happily married with three amazing kids. Looking back, I’m not sure I ever was depressed. I was on medication because I was told to take them by a qualified medical practitioner. Now, I simply couldn’t come off them.

So how did I ever get into this mess? I was prescribed paroxetine (branded Seroxat in the UK, Paxil in the US) aged 33, when my first marriage fell apart. In the aftermath of the break-up, I struggled to motivate myself, had major self-loathing and very little self-esteem. I was also experiencing unusual, spaced-out feelings. So I turned to my GP who recommended some therapy. He also prescribed the drugs which, looking back, seems a pretty swift reaction to an issue that might have been addressed in other ways.

Two weeks later, a therapist told me I wasn’t depressed – I just needed to get a load of stuff off my chest. Talking to someone had really helped me realise I wasn’t mad or indeed bad. I’d just joined the wrong card table and been dealt a bad hand. Now that I was out of that situation and I’d talked about it, I felt OK again. So I didn’t need any more therapy. The trouble was, by this stage I was hooked on Seroxat.

My mood wasn’t improved when a pal of mine drew my attention to the wave of bad publicity Seroxat had been receiving, including examples of people committing suicide after being prescribed the drug. An investigation by Panorama in 2002 highlighted public concerns about suicidal behaviour among children being treated with the drug. In 2012, GlaxoSmithKline were forced to pay more than $3bn in civil liability charges in the US for unlawfully promoting the drug. It was the largest health care fraud settlement in US history and the largest payment ever by a drug company.

Over the years, I’ve swapped from one drug to another, going on mild psychedelic adventures with Sertraline (seemingly softer and less manic-making than Seroxat), Citalopram (that was alright, I suppose, don’t really remember), and latterly fluoxetine (Prozac to the rest of us – not that I realised that when it was prescribed; the name still has a stigma of sensationalism and menace about it, in my book).

To be fair, in order for my excursion with Prozac to begin, I did go to the GP complaining of feeling down on account of my business struggling and money being tight – leading to a general fear of what the future will or won’t bring – and the fluoxetine did seem to improve my sense of wellbeing. So I’m not saying the drugs don’t work, it’s just that you might wonder if you really need them in the first place.

When the fluoxetine ran out, I went on to the NHS app to get a repeat prescription as usual. But when I was hovering over the order button, for some reason I hesitated. Then I got distracted. Two days later, I realised I hadn’t taken any medication. And I felt OK. Two days after that, I still felt OK. Which was not expected. I thought that I’d nailed it – stopped, just like that.

Then I googled Prozac and learned that the cessation issues with this particular drug were not likely to be as quick to materialise; it would be more of a slow-burn affair. A few days later, I did start to experience the symptoms associated with cessation, but it wasn’t as bad as previous efforts to escape. So I just trudged on and tried not to think about it.

By the time I told my GP about it, I’d not taken any medication for almost six weeks. I’d felt nauseous and had all the other withdrawal symptoms – brief bouts of mania and irritability – but it seemed a bit more manageable than before. But, most importantly, I’d just had enough. I wanted to know what it felt like to go through a day without having the edges shaved off. If I had to go to bed for 36 hours to deal with the withdrawal symptoms, so be it.

It had also started to nag away at me over the last few years that certain big life moments might be coming my way. Moments like giving my daughter away, watching my sons get married. Do I really want to go through those experiences not really knowing for sure if the emotions are real?

I thought about all the important things that had happened over the past 25 years, watching my kids being born, seeing the boys score their first goals, watching in awe at my daughter doing triple flips on the trampoline. I came to the conclusion that while I’m pretty sure I didn’t “miss out” on anything while I was on the drugs – that everything had been absolutely “fine” up to this point – I couldn’t be 100 per cent sure.

And so I jettisoned the medication for good almost three months ago. According to my GP, those chemicals are now completely out of my system, so whatever I am now feeling, it’s who I am. It’s me. And, right now, writing this feature I feel pretty good. I feel normal, whatever that is.

There’s no doubt that I could have stayed on the drugs and I’m sure everything would have been fine, absolutely fine. And fine will be a genuinely liberating condition for acute depression sufferers, many of whom can’t leave the house without this kind of medicinal assistance. But if you’re sceptical about whether you should have been put on the drugs in the first place, the idea of fine just isn’t good enough.