“Tolerating” medication

This post is about the word “tolerate” in relation to medication for mental illness.

Some of the side effects I experienced from clomipramine:

  • dry mouth – to the extent I couldn’t eat certain foods, had to drink throughout meals and a lot more than usual the rest of the time, had trouble making conversation over dinner and when walking, and was beginning to get sores in my mouth. I used chewing gum if I was going to be talking for a while.
  • tiredness – to the extent that I had to have a nap every day as well as sleeping through the night.
  • light-headedness/dizziness – this was typically when I stood up, but it also seemed to come in after a while of being awake: I could only read for a certain amount of time before reading made me feel sort of light-headed/slightly nauseous and I had to go to sleep to fix it.
  • travel sickness – I got this when taking the bus and sometimes in cars when I wasn’t driving. Chewing gum helped a bit.

On top of all this there was no evidence that it was helping me at all – there was no change in OCD and I’ve realised in hindsight that I was also becoming gradually depressed – this was probably because I wasn’t taking sertraline anymore, and the clomipramine wasn’t having any anti-depressant effect.

I chose to reduce (and eventually stop) clomipramine because I have to drive for five or six hours every couple of weeks, and I didn’t feel that it was safe to do so with some of the symptoms I was experiencing.

The psychiatrist was understanding and said that she wouldn’t want to take clomipramine herself, but she also used the language of “not tolerating” clomipramine. This made me feel a bit hurt – I put up with those difficult side effects for a couple of months without seeing any improvement in my mental health. Even then I was only able to do so because I have a flexible job and an understanding boss – having to nap every day would interfere with most jobs.

I suspect that the psychiatrist and I understand the word “tolerate” in different ways. I looked up a definition which said that tolerate means to “be capable of continued subjection to (a drug, toxin, or environmental condition) without adverse reaction.” To me, tolerating something is mainly based on willpower, but it seems in the medical understanding that’s not necessarily the case.

It’s probably important that clinicians and patients are aware that they might not be on the same page when language like “tolerate” is used.

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.

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.

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.

The time I got better

I was 10 or 11 when I became unwell with OCD. From then on, OCD stayed with me in various guises, unrelenting. I first sought medical treatment when I was 17 (before that I’d resisted attempts to get medical help). I basically went to my GP and told her I had OCD. By that point I already knew all about OCD and how it affected me.

A quick overview of some of the times I didn’t get better…

I started antidepressants when I was 17, and although I’ve tried various kinds I haven’t seen much of an improvement from any of them. I remember when I was first prescribed medicine I was so hopeful that I would get some relief, but I didn’t. Having said that, more than a decade later I’m still on a high dose of antidepressants – when I tried to come off them a few years ago my OCD got even worse.

In terms of psychotherapy I’ve seen lots of different practitioners over the years. With most therapists my OCD remained mostly unchanged, with one therapist (a psychiatrist) it got worse, and in two cases it improved. The first time it improved was when I had regular sessions with a clinical psychologist who applied cognitive behavioural therapy (CBT) techniques in a dynamic way which took account of my individual symptoms. I made some great progress, genuinely beginning to get on top of my OCD for the first time. The sessions took place over the summer, in between academic years at university. I had been in a sort-of relationship with someone from university, who didn’t like to be seen in public with me, for about 10 months. When I went back to university, and back to the stress and uncertainty of that situation, all the progress I had made over the summer just dissipated. It felt like trying to hold back water. Weeks/months of consistent hard work disappeared within 2 weeks of being back at university.

One of the most cruel things about OCD is that to get better you have to be consistent in your fight against it, which takes a lot of energy and is very frightening, but to get worse all you need to do is have a brief ‘off’ period. But don’t despair, you can get better! Which leads me on to…

The time I got better

The second time I got better my progress did stick. There were a number of factors which I think contributed to me getting well at that time.

  • My life circumstances were more settled and stable than they had been for a long time (e.g. I was now in a stable, beneficial relationship).
  • My therapist had a thorough understanding of OCD, the techniques that could be used to treat it and how to apply these techniques in an appropriate manner.
  • My therapist happened to be a Christian, which meant she could easily tell the difference between my religious OCD thoughts (which were focused on Christianity) and what was actually part of the religion itself.
  • The first ‘half’ of the treatment was focused on cognitive reappraisal (with exposure coming later on). I believe this was fundamental to my success – some people’s OCD responds well to exposure on its own, but the reason I was able to capitalise on the exposure exercises this time is that I had spent a long time strengthening my ability to reappraise the OCD thoughts. This helped me to see them for what they were, at least to some extent, and exposure then helped me to consolidate this.
  • (I changed back onto Sertraline after being on Venlafaxine. This point is in brackets as I didn’t feel an improvement from this in itself (other than the removal of Venlafaxine’s more intense side effects). But it’s possible it supported the CBT I was working on – Sertraline is a recommended medicine for OCD).

I was able to become clinically well (below the clinical threshold for OCD), and to remain well for about 1 to 2 years. I’d guess it took me about 6 – 9 months of weekly or fortnightly CBT to get there. Everyone who knew me well, including me, was amazed. I had been very ill since I was a child, and one of the things you may hear about OCD is that it has to be managed, not cured. Perhaps I just have a different concept of what ‘managed’ and ‘cured’ are, but for me, having the occasional slightly intrusive thought which I was able to bat away, a few times per day, felt like being cured.

How the world felt when I got better.

Being well felt like the world was colourful. I realised just how much I had been dealing with; I remember thinking “if this is what life is like for other people it’s no wonder I’ve been struggling so much with life.” The first Christmas I was well I joined in much more with family activities than I had previously – I had more mental space to engage with others as I wasn’t also dealing with OCD’s constant ramblings. My anxiety level was lower as I didn’t have my worst fears in my thoughts all the time. That helped me to engage more as well.

As you will have realised from the rest of this blog I became ill again. However it took a couple of years and a lot of intense interpersonal and work stress to bring it back. A few months after I had finished CBT my grandma passed away – I thought OCD would use this time of difficult emotions to stage its comeback, but it failed to do that – I kept it at bay. I wish I hadn’t got ill again, but I am optimistic that I can get well again, and stay well for longer this time. After all, this time I know it is possible, because I’ve done it before.