The physical toll of OCD

Last year I was referred for investigations to determine whether there was anything wrong with my heart. This was after the GP found that my pulse was over 100 even though I had been sitting quietly for a while. (In case it’s relevant – I’m not as fit as I’d like to be but I’m not in excessively bad shape.) I went for an ECG and the nurse assured me that there didn’t seem to be anything structurally wrong – no irregular heart beat or other heart-based problem.

What I did notice was that I was able to make my heart rate go down a bit by making a deliberate effort to feel calmer, and to make it go over 100 by thinking about my OCD thoughts. Given that there was nothing physically wrong, I deduced that my heart rate is probably too high because I am always anxious. I’ve since got a Fitbit which records my heart rate and it is indeed often above 100 when I’m not doing anything physically active (just checked now – 100).

It was disappointing to realise that age 29 was the age at which my body could no longer compensate for my OCD. I assumed I’d be a bit older by the time that happened. I also get tired out easily and often have a nap in the day (clearly a theme running through these posts is that I have an understanding boss!) I suspect this exhaustion is partly because of consistently high levels of anxiety and partly because my mind’s internal processing unit is often running the “OCD program” at the same time as the “everyday life programs”.

So there’s another side to OCD that the typical person doesn’t know – how much it affects you physically. I’m also having some difficulty with the physical side effects of the clomipramine today – it’s difficult to eat dry foods and I felt a bit like I had something stuck in my throat this morning. Hopefully this will turn out to have been worth it eventually!

Taking clomipramine for OCD

Clomipramine (Anafranil) is a tricyclic antidepressant – tricyclic antidepressants are an older class of medication compared to the more newfangled [never written that word down before] SSRIs. I believe tricyclic antidepressants are less widely prescribed for mental illness than SSRIs, in part because the side effects are considered more difficult to tolerate. Before prescribing clomipramine my psychiatrist first checked that I had tried an SSRI at maximum dose for a reasonable amount of time (which I had – sertraline at 200mg).

So how is it going? I’ve been on some quantity of clomipramine for about three weeks now. At first nothing happened, but once I was on 100mg I started getting a dry mouth. I wasn’t sure what a dry mouth would feel like as a symptom until I got it. The best way to describe it is to imagine you ran whilst breathing through your mouth (not your nose) – your mouth would get dry. It’s like that but it happens without me doing anything to cause it (I haven’t taken up running with my mouth open). It’s a bit of a hassle, and a surprise, as I have always been quite insensitive to antidepressant side effects compared to reports I’ve heard from others. I have to keep sipping water when I eat foods like bread – every couple of mouthfuls or so. It has become a slight challenge to hold a conversation over a meal, and to chat whilst walking.

I’ve also felt light headed at times, which my psychiatrist said may be due to lower blood pressure linked to the clomipramine (I actually bought a machine to measure blood pressure and it said mine was in the “ideal” range – which may be a lowering as I believe my measurements in the past have generally been “normal” or slightly raised).

I did notice a very slight improvement in my ability to ignore OCD – the frequency of thoughts wasn’t different but OCD’s ability to force me to attend to them was a little reduced. That hasn’t been consistent though – during the past few days OCD has been harder to ignore as I’ve been busy and walking around a lot (walking is difficult with my OCD). So I don’t know if my experience before that was an early sign of the clomipramine helping, or if I just had a day or two when OCD was a little less intrusive for no particular reason.

At the moment the side effects are at an intermediate level: I am perfectly happy to live with them if I see a marked improvement in my OCD symptoms, but if I don’t see any clear improvement then they are too much to put up with in the long term. There’s a possibility that the dry mouth will be temporary, I’ll keep you updated on that!

In a strange way it’s nice to see an antidepressant actually doing something so blatant, as it shows I’m physically responding to it. It’s quite different to when I started on SSRIs (fluoextine/Prozac) – “you’re small so I’ll prescribe a small quantity” – nothing – increase dose multiple times – still nothing, good or bad. I did find a research paper from the 90s that found that having a dry mouth near to the start of treatment with clomipramine was associated with better OCD symptom improvement later on, and a psychiatrist friend told me that in his clinical experience, clomipramine is the medication to be using if you are treating OCD. So I’m cautiously optimistic. The next step is to increase the clomipramine as high as I can tolerate the side effects (within safe limits), then wait about 6 weeks and see if my OCD improves. I’m going up to 150mg tomorrow – keep an eye on this blog to see how it goes.

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…

Speaking to a psychiatrist and preparing to change medication

Near the beginning of the year (it’s now June), I asked my new GP to refer me to the NHS mental health services in Scotland. I had largely given up on NHS mental health services when I lived in England, but given how ill I am, (and how much money I’m spending on private therapy), I thought I would try again now that I live in Scotland. The wait for a mental health assessment ended up being 4 or 5 months after I spoke to the GP, though to be fair to them the original date I was offered was 3 or 4 months from when I spoke to the GP – I had to rearrange due to a work commitment. For any readers not familiar with NHS mental health services, this length of wait is what I’d consider relatively short.

Interestingly, I was referred to a team who work with people with serious/chronic mental illness instead of a team who work with less severe or long-term conditions. This was different to what happened in England in 2016/17 – in that case I was referred to what I believe was the higher of the two intensity levels for CBT (available through IAPT). As I’ve described elsewhere that level of treatment wasn’t appropriate for me, as I had complex, chronic OCD, as well as a lot of previous experience with different CBT-based treatments. The psychiatrist I saw this month in Scotland recognised that, based on my history, the level of psychological support I needed was the level provided by a clinical psychologist (clinical psychologists have a minimum of 3 years of training). Unfortunately the waiting list to see a clinical psychologist is about a year, so she thought my best option would be to continue seeing my private therapist. My private therapist is excellent, but it makes me wonder what other people in my situation who don’t have the luxury of being able to afford private therapy are supposed to do. When it comes to mental illness, those of us with the more serious conditions seem to wait the longest.

Medication options

I got the impression that the psychiatrist knew what she was doing, in part because she acknowledged that I have a lot of knowledge about my own mental health through the way she spoke to me. (In fact, it’s a good job I could remember the various antidepressants I’ve taken over the years, as my NHS records still haven’t got up to Scotland, more than 6 months since I asked for them to be moved.) We discussed what options might be available in terms of changing my medication. One option was adding an antipsychotic to the SSRI (sertraline) that I was already taking. Another was coming off sertraline and moving onto clomipramine. Clomipramine is one of the old class of antidepressants, which were used before the advent of SSRIs. There is some research to suggest it could help with OCD.

In terms of my medication, I started my first antidepressant, fluoxetine (Prozac) when I was 17. At the time I remember feeling that it was quite cool to be taking a medication that wasn’t licenced for under 18s, but unfortunately it didn’t do anything for my OCD. During the following years I moved between SSRIs (and one SNRI, venlafaxine), eventually ending up on sertraline for about 7 years. I felt that sertraline may have backed me up a bit when I had successful CBT in 2012, but other than that I have never noticed a definite benefit of taking it. Despite this I had struggled to come off it on my own (I did try once but my bad thoughts got stronger, so I only managed to get down to 175mg from 200mg – 200mg being the maximum dose that is typically prescribed). For some time I have suspected that this worsening of OCD may have been a placebo effect – i.e. I knew I was reducing the medication so my OCD got worse in response to this knowledge, rather than OCD worsening because of a biochemical change.

My experience has been that GPs are reluctant to do much to alter psychoactive medication. I mentioned clomipramine to a GP earlier this year, as I’d read it could help OCD, and her reaction was “oh, you’d need a psychiatrist for that!”* But because I haven’t seen a psychiatrist since about 2013, I’ve essentially been languishing on a high dose of sertraline that I suspect wasn’t doing anything useful. The psychiatrist I spoke to the other day seemed a bit surprised that no one in the NHS had directed me towards a change in medication, given that I am seriously ill and the medication I am taking hasn’t altered that fact.

The psychiatrist and I decided that I’d try to switch to clomipramine. She recommended coming off sertraline quite fast – faster than I had assumed was ok in terms of side effects – but as I say, I trusted her judgement. I asked her to write down what dates I should reduce the dose by each increment, and also asked what the rationale was for reducing it quickly. She said it was to minimise the amount of time that I am without any therapeutic-level medicine, which makes sense. In the past, when switching between SSRIs, I have always increased the new SSRI at the same time as decreasing the old SSRI, so there hasn’t been a time when I’ve come off completely. However, it isn’t safe to be on sertraline and clomipramine at the same time, so I have to come off sertraline first. This will be the first time in 13 years I haven’t been on a daily SSRI/SNRI.

The psychiatrist also prescribed propranolol (anti-anxiety medicine) and temazepam (sleeping medicine) to help me through the process. I was especially grateful for the temazepam – I’ve always had insomnia but nowadays the more important the event I need to get up for, the more my brain will refuse to sleep. I’ve asked GPs to prescribe temazepam as it helped me in the past but they wouldn’t do so, I think because it’s addictive. As a result I’ve had to do many important things (exams, long drives etc.) on barely any sleep. But that’s a digression!

I’m actually writing this on the last day of sertraline before I’m fully off it, so I know how it’s turned out, but this post has already gone on too long so I’ll let you know how it went in the next post! One last thing to add regarding the psychiatrist appointment – she said she would prescribe the anti anxiety and sleep medication on Wednesday, and on Thursday I got a call from my GP telling me I had a new prescription to collect. I was a little overwhelmed that someone was actively looking after my mental health without me having to fight for it. Counter-intuitively I actually found myself feeling a bit angry – I’ve just coped with severe OCD for so many years without stopping to fully acknowledge that the NHS should be caring for me – that’s its purpose. Now that someone within the NHS is proactively helping me, it’s given me room to feel other emotions in relation to that care. Nevertheless, it is excellent to experience high quality pro-active care, let’s hope it continues!

*Full disclosure (because I have OCD and worry about being 100% accurate) – there’s a chance I said “clozapine” instead of “clomipramine”, in which case the GP’s reaction makes more sense, as from what I can tell clozapine is a particularly heavy duty medication. But having done a quick search online I’m assuming I did say “clomipramine” as that seems to be the medication that has been linked to improvements in OCD.

David Harewood’s Psychosis and Me: Thoughts from someone with OCD

It’s important to preface this post by saying that I don’t have a huge amount of knowledge of psychosis – probably more than the average person but nowhere near as much knowledge as I have about OCD. So if you have psychosis and spot something which isn’t right, feel free to let me know!

First of all, I think I speak for many people who have mental illness in saying how pleased I was to hear a celebrity being so open about his experiences with psychosis. David Harewood: Psychosis and Me (at the time of writing, available on BBC iPlayer) was an interesting programme to watch, and reminded me of some of the similarities and differences between psychosis and my own experience of mental illness.

Similarities

The “third party voice”

The part of the programme that resonated with me most was this quote from a woman who is currently managing her psychosis fairly well. She’s talking about how she deals with the voices when they do come up:

Remind myself that this type of thing has happened before, and it’s just my third party voice. Don’t have to listen to it, certainly don’t have to answer to it, it’s just my third party voice, get on with what [I’m] doing.

person with experience of psychosis

I liked the conceptualisation of psychosis voices as a “third party voice”. The way this woman approaches her voices is similar to the way I used to approach my OCD when I was well and got the occasional intrusion. It’s also what I aim to do with some of my bad thoughts now, when I’m trying not to obey them all (I usually make some attempts in each day, but the number of attempts varies depending on how tired and stressed I am). I’m not always successful, but if I can catch/dismiss/ignore an OCD thought right away, it’s easier to move past it than if I “enter into a conversation” with the thought or give it any serious response. OCD tricks your brain into thinking there is an immediate threat – it co-opts the neural circuitry that was designed to keep us safe from physical danger. It’s very hard for your brain to over-ride that – if it were easy we would have died out as a species many years ago.

So the quote from the woman with psychosis is a good example of what relative recovery looks like, in psychosis and in OCD. For me, recovery from OCD involved maybe 5 bad thoughts per day, all of which could be ignored easily. That was like living in a world of colour, compared to the grey I lived in before it.

The structure and content

Another similarity between psychosis and OCD that came out of the programme was to do with how the psychiatrist noted that the structure of psychosis is similar across people, but the content varies. In addition, the psychiatrist talked about how the content of psychosis varies in line with society and the things that are important to the people involved. So psychosis now can involve social media, whereas psychosis in the past more commonly involved religious themes. This is quite similar to OCD in that the intrusive thoughts and the compulsions are often similar across people, but the content depends on what matters to the individual. I’m fully aware that if I have children, my OCD is likely to focus on causing harm to them, because they will be one of the most important things in my life. My OCD now is focused on religion, because my faith is important to me (and also because it’s been the hardest OCD theme for me to beat).

Talking of which, that brings me to another similarity – a woman who was very unwell on the programme said that the devil put something in her neck, and that the devil was in things and people. This reminded me of when I was younger and I had a bad thought that Jesus was in my dad’s slipper. My dad ended up throwing the slipper against the wall in frustration, which didn’t help.

Differences

Do you truly believe the intrusions?

To someone with no experience of either mental illness, I’d imagine psychosis and OCD can sound similar on the surface. The best way I can think to distinguish them (bearing in mind I haven’t personally experienced psychosis), is that when someone with psychosis gets very unwell, they genuinely believe their delusions, and will express them to others without much awareness that they will sound strange (e.g. David Harewood telling his friends he had three brains). A person with OCD who is very unwell often does know that their thoughts will sound preposterous to a neurotypical person (e.g. I know that “my mum will get cancer unless I count to 10” will sound odd to people without OCD). To varying degrees, people with OCD know that the thoughts are intrusions. But we still react to them because they feel as terrifying as they would if they were true.

David Harewood

To look at another example (this could be potentially distressing, so feel free to skip to the next paragraph), a woman in David Harewood’s programme talked about when she walked in front of a white van because she believed she could save her family by doing so (in a supernatural way – she wasn’t suicidal). Thankfully she survived (she said she ran away afterwards, so I assume she wasn’t too badly injured). But as far as I could tell from her telling of the story, there was no other interpretation in her head at that time, it was just something she “knew” she needed to do. In contrast, I’ve found that if my OCD has to compete with genuine life-threatening situations, it quietens down. For example when I was in an emergency lay-by next to a 70mph road, I was able to walk away from the car without the usual onslaught of bad thoughts telling me where to step. With OCD there is always a tension between our knowledge and our fear. [As a side note: writing this paragraph meant my OCD started trying to convince me to walk in front of a van in order to stop my worst fears happening – OCD works with what’s there unfortunately].

I should point out here that I know that some people with symptoms of psychosis, such as hearing voices, often do know that the voices are generated by their own minds. Similarly, people who used to believe in their delusions wholeheartedly but have since had successful treatment can have good insight into what’s real and what’s a symptom (as demonstrated by the woman on David Harewood’s programme, and David himself). The difference between OCD and psychosis is perhaps clearer when it comes to first episodes of psychosis and the people who are the most unwell. From what the programme suggests, people who are very unwell with psychosis are unlikely to be fully in touch with the real world. In contrast, I am severely ill with OCD but I almost always know when a thought comes from OCD and when it comes from me.

Treatment effects

Another difference is that symptoms of psychosis can show dramatic improvements if people comply with their medicine. At least in my experience, this hasn’t been the case for OCD. Despite my initial high hopes, I’ve never noticed a reduction in the strength or frequency of OCD thoughts as a result of taking medicine (even at high doses, and even having tried multiple medicines). It’s likely that this is partly because I’m not personally very responsive to anti-depressants, for whatever reason. But I suspect that medication for OCD in general isn’t linked with the vast improvements in symptoms that have been described by people with psychosis.

There was a lot of talk in the programme of “if I’d got help earlier” or “if I’d taken those tablets” then things wouldn’t have got so bad. I don’t know how true that is of people with psychosis in general, vs how much it was the programme encouraging people to seek help early. But from what I can tell some people with psychosis can see a big, relatively fast improvement in their symptoms if they are prescribed the right medicine, and so intervening at the right moment can make a big difference.

It’s generally correct that the earlier you can get treatment for mental illness the better the prognosis. However, I wouldn’t say there was a moment where I could have stopped myself getting this ill if only I’d done x at time-point y. [In hindsight, not entering into an emotionally abusive relationship would have given me a better chance at getting well sooner, but I didn’t have the self esteem to make a different choice at that time, and I had already been ill for 8 years by then.] When my OCD was presented with medication (at age 17), it just barreled on through. Maybe it would have been different if I’d been given medication at age 11, but I suspect not – my genetics and life circumstances would have been the same, and both would have continued to play their part in maintaining and worsening my illness. [Note – this isn’t to say that there was never any hope – I did get better at age 23 and I am hoping to get better again]. I’m glad that medicine can have such a positive impact for some people with psychosis, and I hope that one day treatments for OCD will catch up.