Your stories of suffering: After Sarah Vine wrote in Femail of her battle to come off antidepressants, we were inundated with letters from readers thanking her for giving them the courage to speak out too
- Sarah Vine shared accounts from women who’ve relied on prescription drugs
- Rachel McIntosh, 52, shared the challenges of coming off antidepressants
- She recalls feeling sweaty, unsteady on her feet and struggling to focus
- Jane Askey, 69, says her anxiety returned when she tried to withdraw from pills
- Karen Olah, 57, used a private therapist to help stop taking antidepressants
- Louise C and Louise Shirt tried on more than one occasion to stop taking pills
A couple of weeks ago, prompted by a new report warning about the debilitating effects of coming off antidepressants, I wrote a piece about my own struggles in this department.
I had never written about my mental health before, but the study struck a chord. I have struggled over many years with bouts of depression and severe anxiety and while the medication certainly helps, it definitely comes at a cost. It felt like the time was right, so I just allowed my feelings to flood the page.
Little did I realise the effect it would have. The response from readers has been overwhelming. Your letters and emails have poured in, each one telling the same story, albeit in a thousand different ways. Tales of mental suffering laced with heartbreaking detail, humanity and an overwhelming sense of sadness. One reads endless reports about the high rates of mental illness in Britain — over seven million in the UK are on antidepressants, one of the highest rates in the world, but they are just another statistic.
What really drives home the reality of the situation are the individual experiences. They bring to life those headlines in a way that nothing else can.
Sarah Vine shared the stories of brave individuals who’ve struggled to stop taking prescription medication for their mental health. Rachel McIntosh, 52, (pictured) began taking venlafaxine to cope with post-natal depression
Today, we publish a few of those stories, with the permission of the brave individuals who volunteered them. They stand out not just for their eloquence, but also certain unifying themes. Feelings of shame and embarrassment, of sadness and regret but also more specific symptoms, in particular the physical side-effects of being both on and off antidepressants.
Universal to all seems to be the way the drugs, in alleviating the symptoms of mental illness, also remove everything else. Yes, they take away the pain, but they also take away much of the pleasure.
The result is an emotional numbness that, while allowing the person to function on a practical level, at the same time robs them of something fundamental: their sense of self.
This emotional anaesthesia is hard to describe. As are the ‘brain zaps’ that characterise withdrawal from certain Selective Serotonin Reuptake Inhibitors (SSRIs) and that many of the letters mention; the best I can explain it is that it feels like having a fly dying inside your head.
But the effects are clear and eloquently expressed: losing that spark, losing self-respect, feeling like your mind is not your own, like the medication is somehow masking the real you.
And always that sense of being trapped or, as one reader put it, ‘in a glass bowl, where you can never scramble up the sides’.
It’s clear that for many people prescription drugs are a double-edged sword, a sticking plaster solution that gets them moving again — but not with any real purpose.
And because they do not tackle the root cause of the unhappiness, but simply mask the symptoms, many people simply end up on them indefinitely at huge cost to the NHS and themselves. Of course there are times when the illness is so acute it must be treated. But like a broken bone, at some point the cast needs to come off and the patient must undertake a course of physiotherapy. The human mind is not so dissimilar: medication without therapy only fixes half the problem.
The difficulty is that there is very little access to one-to-one therapy on the NHS. Private treatment is patchy and expensive. And people are not encouraged to prioritise their mental health in the same way as their physical well-being.
Sarah Vine (pictured) claims there is a perception that people who struggle with their mental health are weak and self-indulgent
A perception still prevails of sufferers as somehow responsible for their predicament, of being weak and self-indulgent, attention-seeking failures who just need to get a grip.
Read these accounts and you will realise this could not be further from the truth. These people are hard-working, successful individuals who have the misfortune of suffering from a misunderstood and perniciously hard to treat illness.
Hopefully their stories — and the heightened awareness they create — will go some small way to smashing this most damaging of misconceptions.
I WAS SWEATY AND UNSTEADY
Rachel McIntosh, 52, is a former solicitor and now a full-time mother from Leeds. She says:
your story brings back so many memories of the problems I had myself coming off antidepressants.
I suffered post-natal depression after the birth of my second child 19 years ago. I couldn’t stop crying, I felt like the worst mother in the world. So when I was offered venlafaxine by my GP, I was happy to take them.
I felt better within weeks. But not normal. I don’t think I’ve felt ‘normal’ in 19 years. I feel emotionless and flat. When the venlafaxine stopped working, my GP suggested I stop taking it altogether.
Rachel (pictured) recalls withdrawal symptoms of venlafaxine including struggling to stand steady and problems with focusing her vision
The withdrawal symptoms were horrendous. About 12 hours after I missed my first dose I began to feel ill.
The following day, I was worse, the most ill I’ve ever been. I felt sick, I had brain ‘zaps’ constantly — like little electric shocks — particularly when I moved my head. I was sweaty, unsteady on my feet, my eyes were unfocused.
Over the years I’ve been prescribed other antidepressants and about five years ago was prescribed duloxetine, like you, Sarah.
It made me feel better, but by February of this year I’d had enough. I simply want to feel like a ‘whole person’ again.
But although I’ve managed to cut down to a quarter of my regular dose, I’m terrified about the side-effects of coming off altogether.
IGNORANT PEOPLE SAY ‘GET A GRIP’
Jane Askey, 69, a retired personal assistant, lives in Cheltenham. She says:
People who are trying desperately to come off antidepressants find it very difficult to speak to others about how they’re feeling.
You feel you don’t want to bother them or that it’ll be too hard to get through to them. That’s why it’s so important that you and others are writing about this issue.
I had a nervous breakdown almost 20 years ago and as a result lost my job and house.
Jane Askey, 69, (pictured) from Cheltenham began taking antidepressants after suffering a nervous breakdown. Since coming off the drugs her anxiety has returned and she sweats a lot
I was diagnosed with severe clinical depression and anxiety and put on 20mg of an SSRI antidepressant called escitalopram. It helped for a while.
And then I was told by my GP that 20mg was too high a dose for someone over 65 and to cut back. This June, I decided not only to lower the dose, but to get myself off them completely.
It’s been horrendously tough. I did it gradually over three months, until now finally I’m free of them, but I’m still living with withdrawal symptoms. I’m agitated, irritable and can’t sleep. I’m sweating a lot and the anxiety is back. Physically, I’m suffering, yet I find my mind is much clearer. Without these wretched drugs, I have more self-respect. It is like I have woken up from a long sleep.
Well-meaning friends say if I feel so rotten, I should start taking them again, but that’s not very helpful. Neither are ignorant people who tell you to get a grip. But I won’t give up. Like you, Sarah, I’m determined to stay free.
BIRDS SEEMED TO BE FLYING IN MY HEAD
Samantha Brook, 43, is a blogger from Suffolk. She says:
I was 17 when I was first prescribed antidepressants. With hindsight, 26 years later, I suspect there were better ways to deal with an unhappy, wayward teen.
I tried to stop taking them, off and on, for the next two decades but the withdrawal was so frightening, I always ended up going back to them.
Samantha Brook, 43, (pictured) from Suffolk began taking antidepressants at age 17. She recalls experiencing dizziness and noise from missing even one dose
The most disturbing symptom when cutting down or even missing a single dose was dizziness and noise. It was like birds flying inside my head. In November last year — after a quarter of a century on antidepressants — I decided to try again.
I did it slowly, by tapering down half a tablet a week. My GP has been no use — they’re just too busy — and I’ve done this with my boyfriend’s support.
There have been very low moments — but I took my last half tablet in June this year.
I WANTED TO RIP THE WALLS DOWN
Karen Olah, 57, is a retired nursing sister from Hemel Hempstead. She says:
My depression really kicked in about 12 years ago. I had a job with a lot of responsibility as a nursing sister in a pre-operative assessment clinic, and there was no way I could do it.
My two children were still living at home at that point — my husband did most of the work.
Karen Olah, 57, (pictured) from Hemel Hempstead was prescribed venlafaxine to cope with depression. She says during her withdrawal there was times when she felt like she was dying
I was put on a high dose of venlafaxine and got better enough to go back to work in fits and starts, but I really didn’t want to be on them for ever. I felt so lethargic I was hardly moving, and went from a slim 9st to a size 16.
Getting off them was hellish. Every time I tried to lower the dose, I’d suffer terrible symptoms and the doctor would just put it back up again. It got to 2016 and I decided I’d do it myself.
There were times when it felt so dark, I honestly felt I was going to die.
One five-day period sticks out. I’d cut back the dose and was feeling so agitated. It felt like I wanted to rip the walls down. One of the keys to getting off these pills was finding a private therapist. Now, I’m two weeks into freedom from them.
12 YEARS TO GET OFF THE TABLETS
Rachel Wheatley is a journalist in her mid-30s from Chester. She says:
I was first prescribed paroxetine in 2006, thinking it would only be short term. Twelve years on, and I’ve just got off it.
My first attempt to stop was in 2015, after I’d been to see my GP to discuss taking SSRIs during pregnancy. The GP and I both agreed I should try to wean off paroxetine completely.
Rachel Wheatley (pictured) from Chester was first prescribed paroxetine in 2006. She says her mental health went rapidly downhill when she tried to reduce her intake
At first, I did well — I got it down to 10mg from 20mg. I lived comfortably on that dose for two years. But then I lowered to 5mg a day and that’s when my mental health rapidly went downhill.
In a matter of weeks, I was overwhelmed with depression and anxiety. My GP advised me to go back up to 20mg, but having come so far, I was devastated.
In August this year, I felt ready to try again, but this time decided to cross-taper onto a different SSRI, sertraline, which is easier to wean off.
I’ve had to deal with new side-effects, including chronic headaches and gastrointestinal upset. I couldn’t be prouder of myself for quitting my old regime.