18 years ago I was prescribed antidepressants as if they were painkillers. Now I think I’m stuck on them for life.

18 years ago a doctor prescribed me antidepressants as if they were painkillers. I’ve tried to reduce my dose or come off them many times since. Now I think I’m stuck on them for life.

Usually I’m OK with this. But sometimes it feels quite scary. Yesterday I heard a radio report about a new Lancet article recommending that we should taper withdrawal over months or even years (current (unrealistic) NICE guidelines suggest tapering over weeks). Aspects of the interviewees’ experiences were so similar to mine that I had to pull over and take some deep breaths.

But this is nothing new. Reports in 2018 said existing guidance leads to misdiagnosis and harmful long-term prescribing. Thousands of people have reported huge difficulties coming off antidepressants. The longer you’ve been on them, the harder it seems to be to come off. Yet many healthcare professionals take a pretty casual approach to these brain altering chemicals.


Prescribed antidepressants like painkillers

I went to the doctor aged 17 with difficult PMT symptoms. She prescribed me Citalopram to take ‘when you need it, perhaps in the week before your period’ – with no additional information or advice.

No information or alternative treatment offered

By the time I was at university I was taking it every day. Each time I went to the doctor to report difficulties with my mental health he upped my dose. He didn’t offer alternative information and treatment, nor did he ask questions about my situation or history.

These GPs prescribed this medication incredibly casually and left me with no understanding of the impact of stopping suddenly. I unwisely chose to come off completely halfway through my second year. In the end I had to repeat the year – and start taking the pills again.

Ongoing attempts to reduce my dose – and constant conflicting information

I tried to reduce my dose several times over the next ten years and never got below about 20mg Citalopram without finding it just too difficult to cope with the withdrawal and returning symptoms. During this time I moved a lot and received absurdly conflicting information – as seen in the box above.

Coming off completely was the worst time of my life

The most concentrated effort I made to come off was when trying to conceive. I moved to Sertraline then tapered slowly and stayed off for three months.  It was the worst time of my life. I remember lying completely still in bed hoping for sleep but fearing the threat of my mind building, rushing and slipping away into a place of panic and pain that felt unknown and terrifying. My periods stopped and I had regular intrusive images of suicide.

I thought I wasn’t myself on medication. I’d been on it so long I didn’t know who I was without it. Turns out it’s helping me be myself. Without it I was a dark anxious shadow. My world narrowed, anxieties bulged and took over. I retreated into myself and lost the strength or clarity of thought to control eating or exercise demons.

Conflicting advice around antidepressants and pregnancy

I started back on the medication in mid 2016 and we finally conceived in January 2017. Almost immediately a GP advised me to come off again. I chose not to – but not without a lot of soul-searching and worry. I wrote about this for the WRISK project.

She seemed convinced the main reason I found it hard to come off them last time was because I was anxious about trying to conceive. In the time we had it was hard to explain that it was considerably more complicated than that.

Increasing my dose

Oaklan was not a good sleeper. He hated lying on his back and would only nap in the sling or car seat. When he wasn’t asleep he required constant movement and bouncing on his feet to soothe him. He cried a lot. Although it’s very unlikely, the vulnerable part of me still questions whether this was related to my medication or stress in pregnancy. It was impossible to rest in the day and I survived on very little sleep for almost 10 months. This exacerbated my existing anxiety and depression and gave me insomnia. Bedtime and naps made me panic. The only way to cope (and sleep) was to increase my dose again.

On Sertraline for life?

Now I am on 100mg/day and managing well. After years of trying, I am finally about to start CBT with an NHS counsellor whom I like and trust. But I can’t see my way to a time when I’ll ever be able to stop taking antidepressants.  It would shake up our family for months or even years without any guarantee of success. I’m pretty terrified of even trying.

Clearer guidelines for healthcare professionals

NICE is finally reviewing their recommendations in this area. I really hope that these guidelines;

  • emphasise the importance of consistent advice, based on recommendations and not personal experience or opinion,
  • ensure that antidepressants are prescribed sensibly alongside information about withdrawal and long-term effects,
  • require medications to be regularly reviewed, and
  • ensure patients understand the importance of seeking support to taper very slowly when they want to stop taking them.

Medication can be a valuable and vital part of treatment. But patients (particularly those who are young and vulnerable) need to be offered consistent information and better support.

5 thoughts on “18 years ago I was prescribed antidepressants as if they were painkillers. Now I think I’m stuck on them for life.

  1. Lizzie Carver

    Over my sixty-five years I have managed my depression in various ways – with medication and without. I can absolutely say that the years in which I WAS taking medication have been the most positive and productive and the years when I was not were all about a slow slide down into a dark place and working hard to keep my head above water just enough to function.
    When I am on medication (as now), I have enough “in the tank” to be able to use other helpful strategies to keep well – whether reframing a thought or how I view a situation, or using EFT (“tapping”) to work through something that has triggered me (because meds don’t make everything in life amazing and problem free!). I am very grateful for the thoughtful, respectful support from my GP – I expect to keep taking the meds for life and I am completely OK with that. What works for me may not work for others, but I am grateful to have found a way forward.

    Reply
    1. fostress Post author

      Thank you for sharing your experience Lizzie – it’s really helpful to read. So pleased that you have good support from your GP and the right systems in place for you. I suspect if you always see the same GP this would make a big difference too – but that seems rarer these days and is harder if you are moving around a lot (especially when you are young and going to uni, looking for work etc).

      Reply
      1. Lizzie Carver

        Thanks for responding, Clare. Actually, my newest GP has been really helpful (after I was bounced around by GPs coming and going within the practice – he’s the fifth in ten years). But, yes, forming a good “working” relationship with a GP is fundamental and I totally take your point about that being tricky during the Uni and early working years.

        Reply
  2. Kathryn

    I could have written this exact entry. Put on antidepressants at 15, tried getting off so many times as I too was told would need to stop taking them if I ever wanted to conceive. Was told there was no issue staying on them for life, just like a Diabetic would need to take insulin.
    Now on Sertaline 100mg a day. I feel my memory has been affected. If I don’t take them at the same time every day I become spacey, tired, headaches, irritable and dizzy. Family (who are health professionals!) think I’m exaggerating withdrawals.
    Thank you for raising awareness and making me realise I’m not the only one.

    Reply
    1. fostress Post author

      Sorry your symptoms are not taken seriously by your family Kathryn – you are definitely not the only one! And it’s perfectly possible to conceive, carry a baby and breastfeed on Sertraline – I did. The WRISK blog I link to in my post has more info.

      Reply

Leave a Reply to Kathryn Cancel reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.