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.

CBT and the NHS

I started this intending to write about the exposure work I’ve just done, but it turned out I have a lot of thoughts about exposure therapy for OCD, and the NHS provisions for OCD, so I’ll put them here and write a different blog about today’s exposure.

Cognitive behavioural therapy for OCD

The recommended treatment for OCD is cognitive behavioural therapy (CBT) combined with medication (usually antidepressants). One component of CBT is exposure therapy, which involves repeatedly approaching the thing that makes you anxious (yes, it is a brutal form of therapy). Usually you’ll rate your symptoms in a hierarchy of the least difficult to the most difficult, then you’ll start with exposure to the least difficult, and move up the chart. The theory behind it is that when you first encounter the frightening object/situation, your anxiety will spike, but if you stay with that anxiety then it will gradually come down. With practice, the initial spike of anxiety should be lowered.

This technique works pretty well for things like contamination OCD. For example, touching a toilet seat and not washing your hands – this would initially cause a lot of anxiety, but over time the idea is that this anxiety will decrease. In this example it also allows the individual to collect evidence that they have touched the toilet seat and neither they nor people around them have dropped dead from germs. Exposure alone is not so good for religious themes, in my opinion – I could do the things that OCD tells me will send me to hell, but there’s no way for me to see that this won’t send me to hell.

My previous experiences with CBT for OCD

The good

In 2012 I had successful CBT for religious OCD. It did involve exposure, but we spent months working on cognitive reappraisal before I attempted the exposure. This strategy worked, because although exposure was terrifying, I could fall back on my logical arguments that showed me that OCD was lying. In this case the cognitive reappraisal took the place of the “evidence” that I might have had if I was dealing with a different OCD thought (e.g. evidence that no one died following contamination based OCD exposure). It also helped that my therapist had an in-depth understanding of OCD and was a Christian, which allowed her to easily differentiate between what was OCD and what was typical for other Christians (e.g. praying for forgiveness is typical, but compulsively doing so can be OCD). This was before the NHS “reforms” really started to bite, so I was able to have quite a long period of CBT before it had to end because they were prioritising people with “more severe” conditions such as psychosis, and I wasn’t suicidal. Thankfully we’d done enough work that I was able to continue improving over the following months even though I wasn’t having therapy.

The bad (sort of)

In 2016/17 I had unsuccessful CBT for religious OCD (I had stayed well for about two years after the 2012 CBT, but had got ill again). This was with an IAPT therapist who, as far as I know, wasn’t specialised in treating OCD or religious OCD. She was very focused on exposure and not keen on me using cognitive reappraisal. I told her that beginning with reappraisal had worked for me before, and that I had had many years’ experience with CBT and knew what had and hadn’t worked (I had had a lot of less successful attempts at CBT prior to the successful 2012 attempt I described in the previous paragraph). Unfortunately she was worried that if I focused on reappraisal it would end up being rumination (which is a symptom of OCD). This is a valid concern in general, but it wasn’t appropriate in my case as I had 2 decades of experience with the way my OCD operates and 10 years’ on-and-off experience with CBT for my OCD.

I did have some success with the exposure therapy with her, but I had lost confidence in her because she wasn’t willing to adapt according to my experience, so I think that limited the success I could have had. Having said that, I remember feeling that I was working harder than I had done in 2012 when I’d actually got better, so it wasn’t simply to do with my level of effort. Eventually I had to say something along the lines of: I’m not willing to go further with exposure unless we work on cognitive reappraisal. She accepted, but by this point I had nearly come to the end of the 20 sessions that the NHS allows. I was a bit better at the end of that course of CBT than I had been before it. However, that lasted about 2 weeks(!) Shortly after I finished CBT one of my heroes died by suicide – my OCD reacted by getting the worst it had been in years, and it’s pretty much been stuck there ever since. In order to get higher-level help the waiting list would have been 12 to 14 months. Due to my work I didn’t know where I would be living in 12 months’ time. In addition, in order to access that help I was led to believe that I’d need to go via the person who had given the CBT, and I felt awkward about that. I gave up on trying to get NHS help at that time. However, I’ve approached the NHS for an assessment in the place I live in now, so we’ll see what happens. (As it turned out I did end up moving about 250 miles away for work around the time I would have reached the top of the waiting list in that area).

The ugly

Just to make the titles match up nicely, here’s a brief description of a psychiatrist providing “ugly” CBT, from around 2009 before all of the above happened. At the time one of the things my OCD was focusing on was HIV (either that I had it and would give it to others, or that I would catch it from others – it tended to switch between these two, even though logically that makes no sense). I had a cut on my finger and the psychiatrist wanted me to touch the cut to the arm of the chair I was sitting in. I told her I’d had CBT before and was aware of what level of anxiety-increase is therapeutic, and this was too far, but she insisted. I ended up doing it and then rushing in a panic to Tesco after the therapy appointment to buy plasters to cover up my cut. This undid the good work I’d achieved in leaving the cut uncovered. At one point that psychiatrist even said something to the effect of “I can do it so why can’t you?” Not a good experience of CBT.

Back to the good again!

To end the blog on a more cheerful note, I am currently having a small amount of success using CBT techniques with an OCD specialist – we’ve recently started working on exposure. My next post will talk about the CBT I’m doing right now with this new therapist.

I’m privileged that my parents can help me to pay for this private therapist who has expertise in OCD, though I feel a bit ashamed that I am accessing private mental health care when many people can’t. I partly justify it to myself by considering that my job involves improving other people’s lives, and if I can get well then I can devote more energy to my job, though this justification feels a little hollow. I hope that in the future I can pay for high quality, easily accessible mental healthcare through my taxes instead.