I’m struggling to get my life back after years on antidepressants

This morning – as with every other morning – I woke up with feelings like a hangover, even though I hadn’t drunk a thing last night. I tried to tie up my hair, but the room started spinning, and I almost fell over. Normally, I’d go to the gym to feel better, but if I exercise these days, I feel wired and can’t sleep. I haven’t felt “normal” for the past 14 months. In fact, I can’t really remember what “normal” feels like, how I felt before I tried to come off antidepressants. 

Things were particularly bad today, because the night before I had reduced my antidepressant dose by 0.015ml, which I now take as a liquid. That quantity is the equivalent of a tiny raindrop, yet the withdrawal symptoms were significant.

For over a year, I have been struggling to get off a drug called mirtazapine. My GP doesn’t believe in withdrawal symptoms. She thinks it’s all “in my head”, that my experience is down to “anxiety”. I know what anxiety feels like. It’s not like this. These symptoms are totally physical, and they are disabling.

Then, last week, something in the news raised my hopes, and the hopes of millions of people like me. The medical profession has refused until recently to believe that antidepressant withdrawal really exists. For years, we have been told that the terrible symptoms we have after stopping are “all in the mind” or “a return of our original condition”. We have felt gaslit. But things could finally be about to change.

On 2 March, the NHS announced a framework where patients will be offered help to come off prescription pills including antidepressants and tranquillisers. The government is backing the establishment of support groups and helplines to help deal with withdrawal symptoms such as dizziness and insomnia. 

This is long overdue. New figures show that 8.4 million adults in England were prescribed antidepressants in the past 12 months and two thirds of these have been taking the pills for more than a year.

It’s important to mention here that antidepressants have been shown to help lots of people. Many can also simply stop their treatment without any consequences and walk away. But in countless cases – as I have discovered – if patients are still taking these drugs it’s because it’s simply too unbearable to stop.

I first started taking antidepressants in my late teens. Looking back, I was probably suffering from postnatal depression: I had the first of my three daughters early in life, and my relationship with my partner was difficult. My GP didn’t ask me any questions: She just wrote me a prescription for citalopram, an SSRI antidepressant. The waiting list for therapy was long and I wasn’t willing to wait – I just wanted to feel better.

Throughout my 20s and 30s, I was on and off SSRIs, until I took a break in 2021. I was in a new relationship, and something magical happened – I suddenly felt proper sexual feelings for the first time in many years. I did some reading and discovered this may have been due to my antidepressants: SSRIs can blunt the libido. But I felt superstitious about coming off antidepressants after so long, so my doctor recommended I switch to a drug called mirtazapine in August 2021, which apparently didn’t affect the libido in the same way. 

As before, there was no mention of side-effects or eventual withdrawal symptoms. Like millions of others, I trusted my GP.

After my first 15mg bedtime dose of mirtazapine I was knocked out, as if I’d had a general anaesthetic. I didn’t need this: I’d never had trouble sleeping in the past, and I felt groggy throughout the next day. At the same time, I started craving sugar – so much so, that for the first time in my life, I began baking: brownies, cookies, lemon drizzle cake. Within a month, I was gaining weight – eventually adding 19lbs, going from 8st 2lb, to 9st 11lb (I’m 5ft1in).

As someone who was proud of my figure and who exercised a lot – football, weight-training – I found this upsetting. Could it be related to the antidepressant? After four months of being on mirtazapine, I called my GP who revealed that, yes, weight gain was a side-effect of the pills, that this weight gain wasn’t healthy and I should probably come off it. Feeling in a good place, I was excited to leave the past behind and ready to live medication-free.

For the previous seven days, I had already started to cut back on my drugs, taking one pill every other day. My GP then told me to drop it to one every two days, and stop taking the mirtazapine altogether in a week. So I followed her advice. 

On day five of being off my meds, I woke up with physical sensations I had never had before. My heart was racing and I was covered in sweat. The weirdest thing of all was the feeling in my body – I felt irritable and I couldn’t sit still, as if my skin was crawling. Eating was out of the question, I felt so nauseous.

I rang my GP who couldn’t say for sure that these were withdrawal symptoms, but if they were, they would “only last a week”. She prescribed me a beta-blocker for “my anxiety”. But things continued to get worse over the next four days. I was unable to leave my bedroom, and yet I couldn’t sleep.

The days were endless and I felt like I was in hell: I was rocking back and forth, crying, trying to get to sleep – but all I could hear was my heartbeat. My worried youngest daughter stayed with me, rubbing my back, trying to help me calm down.

Luckily much of this happened over the school Christmas holidays, as going to work would have been impossible. Desperate to discover what was going on, I found a mirtazapine recovery support group on Facebook. It only took a few minutes to see that thousands of others were going through exactly the same withdrawal symptoms, and that I had become dependent in just four months. If I was to have any chance of recovery, I’d have to go back on the drug, and cut back slowly, using a liquid version of mirtazapine which made it easier to make smaller cuts in dose. All the advice was backed up by psychiatrists; this was all real and I was not alone.

So I took one half dose of my mirtazapine, and felt completely normal again. The next day, I was out and about with my daughter, having coffee, as if nothing had happened. It had to be the drug, the lack of which had made me feel so terrible, but with one dose had fixed everything entirely.

I asked my GP for liquid mirtazapine. At first, she refused to prescribe it, but I persisted, sending her medical papers and research. This was stressful and upsetting. Patients should not have to find their own solution to heal from a drug that has been prescribed by the medical profession.

Finally, my doctor agreed to a 10-week taper – when you are administered a prescription of a drug to decrease the amount you take gradually. I knew this period would not be enough.

How is this different to a street drug, I thought? Isn’t this what heroin users have to do? I started to taper – or reduce – a tiny amount of liquid every 2-4 weeks, the theory being this would allow my brain to adjust. But with each tiny cut, I went through new withdrawal symptoms. Having managed to get back to work briefly, I finally quit in February this year to concentrate on my recovery, so I’m currently surviving on sick pay.

14 months on, I’m down to 1.65mg. My GP has reluctantly carried on prescribing the liquid after I enlisted the support of the Bristol Tranquilliser Project, who advocated for me. Thanks to them I no longer felt crazy and erratic. I felt less alone.

Even so, I feel like a criminal whenever I ask for a new prescription. While the symptoms aren’t as terrible as they were at the start, I feel constantly unwell – this isn’t like flu, when you know you’ll be ok in a few days. I’m still overweight, and I have tinnitus in my left ear (another symptom). Every time I drop another percentage of my mirtazapine, I get a new symptom, like today’s dizziness. I’m still over a stone overweight, which makes me feel even worse.

I look at the bottle of mirtazapine on my bedside table with such mixed feelings. I feel angry, upset and let down. But I know I must take it to feel well. 

Antidepressants should be a last resort, and patients deserve informed consent. We need to be listened to and we deserve the right to come off these medications safely, with more support from our doctors.  

Ultimately, fewer drugs should be prescribed. We need more access to talking therapies: not nine months down the line, but immediately. Antidepressants do not solve issues, they mask them. The problems will still be there when you come off them. 

As for me, I’m struggling to get my life back. If I do any physical activity, I can’t sleep at all that night. I miss playing football and weight-lifting. I miss feeling fresh in the morning, I miss me. I’ve lost the very things that gave me joy and kept me mentally and physically well. But somehow I know they will be there for me, waiting at the end of my taper – and that’s what keeps me going.

As told to Miranda Levy