Clomipramine and relapses

Hello again after a while away from this blog. The main reason for my absence has been tiredness. I started taking clomipramine at the beginning of July, after 7 years of taking sertraline. I moved up through the doses, eventually going through 150mg and then 200mg. On these doses the side effects became more pronounced – on 50mg and 100mg I had a dry mouth and light-headedness, but I tolerated it. However on the higher doses I ended up having a nap almost every day. I’d generally be able to manage my work for a while and then the light-headedness/dizziness would become a problem (for which the only solution seemed to be to have a sleep).

If this were helping my OCD it might be worth it, but I haven’t seen any improvement in my OCD symptoms. If anything, my mental health got a little worse as I was more tired and having to put up with unpleasant side effects. The last time I saw my psychiatrist we agreed that I’d go down to 125mg – there was an agreement that we should “exhaust” the option of clomipramine before moving on to trying something else – make sure it definitely isn’t going to start helping with my OCD.

When I went to collect the 25mg tablets the pharmacy didn’t have any in, and I was going away for a week. As a result I decided to go back down to 100mg until the 25mg tablets became available. My rationale for doing that was that although the side effects had been very pronounced, I hadn’t noticed any mental changes, and I had gone up from 100mg to 150mg without taking 125mg in the middle.

In hindsight this seems to have been a big mistake, as after about a week on the lower dose of 100mg I got a relatively sudden onslaught of constant intrusive thoughts on one specific theme. My usual OCD is hard to live with but this was horrific. I felt on the edge of terror much of the time, and kept breaking into tears because I felt like I couldn’t cope with such constant fear. It was like the extreme fear provoked by exposure therapy, but without anything to give rise to the fear or any way to stop the exposure.

I have experienced this sort of thing in the past, but it hasn’t really been unprovoked like this since I was a teenager (I’m 30 now). It felt a bit like the devastation of a teenage heartbreak, but with no apparent cause. Either it was caused by a mixture of things coming together, or the reduction in medication. I am really hoping it was the medication as then it’s easier to know how to respond.

I have tried to get in touch with my psychiatrist but haven’t had a response. I got through to a GP who thought that the reduction from 150mg to 100mg could have been the issue – it is a reduction of 1/3rd after all. The increase hadn’t done anything good, so I didn’t realise that reversing the dose could do anything bad. After speaking to a friend who is a psychiatrist I’ve gone back up to 125mg (I picked up the 25mg tablets from the pharmacy later on).

The past 24 hours I’ve been feeling a little better, but I still feel extremely delicate mentally. I’m scared that the incredible fear will come back and sad at how hard this illness is to cope with. I hope to have some more positive posts for you before too long.

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.

Walking the dog with OCD

Proceed with caution if you have religious OCD, especially if it’s based on Christianity – here I talk about some of my religious thoughts without going into detail on why they’re wrong (though be assured they are wrong, as is every OCD thought).

Just got back from a dog walk. I fought hard with OCD on this walk – specifically, by allowing my feet to face white marks when I was walking, even if there was a beat at the same moment in the song I was listening to. This post is about the point at which I struggled most during the walk, due to a specific thought which took hold more than the others did.

The thought

There was a word in a song I was listening to that sounded a bit like “fool” (I don’t think it was “fool”, it might have even been a French word). My foot was pointing at something white, and in OCD parlance that means using that word to describe the Holy Spirit (white = Holy Spirit). OCD tells me that this in turn means I will go to hell, due to insulting the Holy Spirit. This is bolstered by a Bible verse in which Jesus says if you call your brother a fool you’re in danger of the fires of hell – so I’m quite nervous about the word “fool” in general, even though I’ve heard other Christians use it without concern, and even though I don’t really believe in hell. Interestingly it takes a whole paragraph (with additional links) to explain this thought, but in my head it’s pretty much instantaneous – all those connections are just something I “know” less than a second after it’s happened.

Whether to neutralise the thought

OCD said I had to neutralise what I’d done by winding the music back and walking back to the spot in order to “take it back” or “take it back into myself” by making some kind of mental movement towards myself whilst my foot was pointing at the white mark and the word came up in the song. Alternatively I could neutralise it by thinking or saying “no” or “not” whilst pointing at the white spot with my foot at the moment the word came up in the song. This would, according to OCD, “undo” what I’d done wrong. (Incidentally, beware of OCD claiming that your compulsion can make something ok – OCD will never be satisfied that you’ve done it correctly enough for it to be truly safe).

Choosing not to neutralise it

I didn’t want to neutralise it as I’m trying to do exposure when I walk. So I spent about 3 to 5 minutes stood still trying to work out what I should do (my dog meanwhile had a lovely run in and out of the woods). Then (and now) I don’t have a great deal of access to the reality that this is preposterous and makes no sense – it feels quite real. Nevertheless I used the arguments that a) God knows it’s OCD and doesn’t want me to obey it, b) my brain can’t use safety signals properly, so it won’t be possible for me to feel that it’s ok; I have to choose to believe it is safe even though it feels threatening. I didn’t go back in the end, though I’m still feeling anxious about that decision about half an hour later. My Fitbit reckons I was doing cardio exercise during this walk (a leisurely walk in the sun + OCD = 143 beats per min – I’m not especially fit but I’m young and physically healthy, so it shouldn’t be this high).

We walked through a meadow a bit like this

Yesterday, when I walked the dog with my mum and sister through a meadow, my sister commented on how nice it was and that we were living our best lives. I brought the tone down a bit by adding that I was in the process of trying to prevent my eternal suffering. It reminded me of a joke John Robins made, that when he goes on holiday he can’t relax because he (i.e. the problem) is still there. OCD is there 24/7, whether I’m in a relaxing situation like having a massage, whether I’m concentrating on something or doing my favourite activity. It did stop for 20 minutes when I gave an important talk recently as all my mental resources were focused on the talk. OCD also shut up for the majority of episode 5 of Game of Thrones season 8, as it’s my favourite programme and a lot was happening. OCD was there as usual in episodes 4 and 6 though.

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.