Coming off sertraline part 2: reflections on the experience

Why was it relatively easy for me to come off sertraline? Primarily because sertraline wasn’t doing much for me. I had suspected this may have been the case, but I felt stuck on sertraline; when I tried to reduce it myself years ago I’d experienced increased symptoms (probably a kind of placebo effect), and I wasn’t under the care of a psychiatrist so I didn’t have anyone external whose expertise I could rely on to guide me.

When I sought advice on coming off antidepressants from people who had experienced it, they spoke of brain zaps and going to a very dark place mentally. One person advised me to seek out extra childcare etc. if I had children (I don’t, but they didn’t know that), and to stay off social media because of the state I’d be in. None of this ended up being necessary for me, in part because I was/am severely mentally ill in spite of the sertraline – I can only work full time because I have an understanding boss and flexible hours; my resting heart rate is very high (currently 97 after sitting still for about an hour) despite my young age and physical health because I’m always frightened; and I get worn out easily because my brain is always doing its terrifying thoughts as well as everything else. I don’t have the option of going from managing life with sertraline to not managing life without sertraline – compared to mentally healthy people I’m not managing, sertraline or no sertraline. I can “function”, but it takes a lot more energy and difficulty than it does for people who are well.

However, a happier and less ranty reason why things didn’t get dark when I came off sertraline was that for me, depression has generally been a response to OCD rather than a condition in its own right. When I was a teenager I thought in depressed ways (and was diagnosed with dysthymic disorder – mild chronic depression), but around a decade in therapy has helped me learn how to think in ways that are more positive. It’s been a pleasant side effect of the therapy that was supposed to treat my OCD. The self harm of my late teens and early 20s was partly a reaction to OCD hitting me over and over again – I didn’t have any healthy way to stop it, or much hope that stopping it was possible. Although my OCD is still very severe I am better at managing how I react to it now, and I know I can get well because I did get well for about 2 years in my mid-20s. I have a strong sense of hope for the future, and determination to get there.

Antidepressants and OCD

I think this experience of coming off sertraline could be used as an example of how little we know about treating OCD in comparison to some other mental illnesses. Usually people with OCD are prescribed a high dose of an SSRI, whose primary use is to treat depression. I’ve seen SSRIs in action for depression, and they can make a positive difference to someone’s mood. Anxiety, like depression, is also linked to mood states, such as high arousal, and can respond well to beta-blockers. In contrast OCD is very cognitive and very “wordy”. And even within the relatively barren landscape of funding for mental health research, work on OCD is drastically under-funded. I have a suspicion that instead of devoting money to finding medicines that help OCD specifically, it’s been a bit of a case of “try throwing antidepressants at it”. That’s not to say SSRIs can’t help with OCD – there is evidence to suggest that they can help when prescribed in high doses. What I’m saying is that if you want to make a fortune, you won’t do it by finding the magic bullet for OCD. It’s a mental illness whose devastation is not yet recognised by our society. We’re getting there though, one “no, you can’t be a bit OCD” at a time.

Having said all that, I have to admit that I am about to embark on an approach that could be described as “try throwing a different type of antidepressant at it”. As with SSRIs, there is evidence that clomipramine (one of the older tricyclic antidepressants) can help with OCD, so it’s worth a try. It’ll be excellent if it does help. But if nothing else, I’ve got off a medicine which wasn’t really helping (sertraline), and which I had previously felt stuck on. I’m proud of that achievement.

Coming off sertraline part 1: initial report

  • Time on any SSRI/SNRI [“modern” antidepressants]: 13 years
  • Time on sertraline (Zoloft): 7 years
  • Sertraline dose during that time: 200mg, then 175mg
  • Day I came off sertraline entirely: 25th June
  • Day today: 30th June (technically 1st July, see also: insomnia)

I’ve been off sertraline fully for a few days. I had heard some horror stories of coming off antidepressants, and was a little frightened about doing it – although I’ve changed between SSRIs in the past, I always did it by reducing the old one and increasing the new one at the same time. The psychiatrist I spoke to said this wasn’t safe with sertraline and clomipramine because of the risk of sertonin syndrome.

I can report that almost everything that’s happened has been in the range of what I am used to experiencing – I had some sleep disturbance, but I’ve had that many times whilst on a high stable dose. My OCD symptoms have arguably got worse, but not dramatically so; they are still within the range of what I experienced whilst on a high stable dose of sertraline. For comparison, the increase in OCD symptoms hasn’t entered the Top 3 Occasions In Which My OCD Got Worse in the past 2 years, and probably wouldn’t make the Top 10 either.

The one thing that is new, for me, is that a few times I have felt on the verge of tears for no reason. The the existence of things happening on the news was one time, as was the concept of watching Stormzy performing at Glastonbury (I’m not particularly interested in Stormzy). One or two of the times the feeling of tearfulness occurred I did feel sad about something, but it also happened when I wasn’t upset or sad. It has only really occurred since I’ve been fully off sertraline – going down to 150/100/50mg didn’t seem to cause it.

What have I learned?

I learned that I was correct in my suspicion that I was paying for a medicine that wasn’t working for many years. I’m angry that this happened, given that for the whole time I was doing this I wasn’t earning enough money to pay tax, so NHS prescription charges weren’t insignificant (I did try to get the medicine for free but didn’t qualify for it). I’m also angry that I spent time feeling frightened that I could lose access to sertraline if the UK left the EU without a deal on 29th March*. Though it should be acknowledged that that fear was justified even though sertraline wasn’t doing much for me – if I had been forced to come off it cold turkey or without psychiatrist oversight the process likely wouldn’t have been so smooth.

*We can debate the likelihood or otherwise that a no deal exit from the EU would lead to medicine shortages, but I’m putting it in this post as an example of the extra stress that this uncertainty caused me, as a person with a mental illness that thrives on uncertainty. Almost by definition those of us with OCD live in deep fear of “what ifs” – if there is a 0.0000001% chance of something terrible happening, that is what OCD will go with, not the 99.9999999% chance that it’ll work out ok. The argument made by some that medicine shortages are very unlikely isn’t much comfort.

Part 2 of my post on the experience of coming off sertraline will be released tomorrow…