What’s happened in my brain?

Over the past couple of months I’ve had three sets of symptoms: intense intrusive thoughts/fears about death, depressive symptoms, and my usual religious OCD obsessions and compulsions.

I know how to handle my usual OCD, and to some extent I am familiar with intrusive thoughts, as my OCD took this form when I was a teenager. But I don’t know how to handle depression. I feel frustrated because people’s advice for how to deal with it is to talk to people, have therapy and so on. But I already do this – all through this period I’ve talked to my loved ones and increased the frequency of my therapy sessions. I’m also quite good with being kind to myself – a side effect of 10 years of therapy for OCD is that I learned how to reduce self-criticism and increase self-care. So why am I depressed? The most likely answer is brain chemistry.

There is some debate in popular culture about how useful antidepressants are, and whether they are doing what we think they are doing. But to look at it from a neuroscientific perspective, the generally accepted thinking is as follows: neurons communicate with each other across gaps called synapses. This communication is done by neurotransmitters. These are released from neuron 1, travel across the synapse, and are taken up by neuron 2. Any neurotransmitters that are left floating in the synapse are taken back by neuron 1. One of these neurotransmitters is serotonin. It’s theorised that a feature of some mental health conditions is that neuron 1 is too keen to take the serotonin back. This means that neuron 2 doesn’t manage to get enough of the serotonin. So the way SSRIs are thought to work is that they keep the serotonin in the synapse for longer. This gives neuron 2 a better chance to pick the serotonin up.

My best guess for what happened, based on my own knowledge and discussion with my psychiatrist, is that after 7 years of the SSRI sertraline, my brain got used to dealing with sertraline-enhanced levels of serotonin. When that sertraline was taken away, my brain didn’t immediately spring back to “healthy” use of serotonin. Instead it ended up with depression-like levels of serotonin transmission, which in turn led to depression symptoms.

Depression over the past few days

The last few days have been a little easier in terms of depression symptoms. I don’t think I’ve cried in the last few days – prior to that I was crying every day. Crying every day was strange for me – even before I started antidepressants this wasn’t something I had experienced. When I was having a hard time with life events I would cry quite a lot, but that was in response to what was happening – this recent crying could be triggered by anything and was linked to my general mental state rather than external circumstances.

The change seemed to come when I got a good night’s sleep. Before that I’d been having trouble sleeping, and was only sleeping for short periods at a time. I think my new SSRI (fluvoxamine) might be starting to work as well. I got up to 150mg on 10th October, and 200mg on 15th October. I’m continuing up until I get to the maximum of 300mg. This is because you have to be on high doses of antidepressants when treating OCD. But to be honest at the moment I want it to reduce the symptoms of depression, reduction in OCD symptoms would be a bonus.

In contrast to the experience with clomipramine I haven’t had any obvious side effects from fluvoxamine. The difficulty sleeping might have been related, and I also had some headaches (although that might have been due to lack of sleep).

Getting from three to two

As I said above, I’m used to coping with OCD; I’m not used to coping with depression as well. Since the depression has lifted slightly I’ve had a little spark of hope that I can deal with the intrusive thoughts – they are scary but they are something I’ve dealt with before, and I have strategies for how to approach them. I’m leaning on my new SSRI to help with the depression – if it doesn’t then I hope I can go back to sertraline and that will help with the depression instead.

Having all three of the symptoms I mentioned above has been horrible and incredibly difficult to cope with. The past few days have been a bit easier, I’m hoping this sticks. Sleep seems to be important so I’m trying to prioritise that.

Depression

Last week (4th October) I had an appointment with my psychiatrist, the first chance I’d had to see her since I got very ill at the beginning of September. I told her about how much I’ve been struggling – the constant intrusive fear, feelings of terror, and frequent periods of crying. I keep feeling that I can’t cope and I’m finding it very difficult to keep pushing on each day. I haven’t felt this bad for this long in at least a decade.

We discussed the fact that since I came off sertraline at the end of June I haven’t been on a high dose of an antidepressant. I did get up to 200mg of clomipramine but only stayed on that dose for a week as it was causing light headedness and I didn’t think it would be safe to drive for long periods of time.

It turns out that taking away a high dose of antidepressants seems to have resulted in my brain getting depressed. Although it sounds kind of obvious when you think about it, I (and presumably my psychiatrist) hadn’t anticipated that this might happen – to the extent that I’ve had depression in the past it’s generally been in response to trying to cope with OCD, rather than as a condition in its own right. (I was coping with severe OCD whilst I was on sertraline, but I wasn’t depressed).

The psychiatrist told me that 2 months is a typical length of time to relapse with depression after stopping antidepressants. She also told me that the fact I’ve been feeling worse earlier in the day than in the evening could be a symptom of depression know as diurnal mood variation.

Right now I’m fed up and desperate for this to stop. But when I spoke to the psychiatrist I did feel hopeful – she seemed fairly sure that the horrible time I’ve been having has its roots in brain chemistry. That suggests we can put it right by improving the brain chemistry.

Risk something new or go back to coping?

You have to build up antidepressants slowly, and it takes time for them to work. So I’ve had to choose whether to go for a new SSRI which might help my OCD, or whether to go straight back to sertraline, which wasn’t helping my OCD but which I now know seemed to be keeping me “ok” in terms of not feeling “wrong” in my head all the time/having depression.

Someone recommended fluvoxamine, an SSRI I haven’t tried before – they had found it very helpful for their OCD. So I’ve decided to go for fluvoxamine. It’ll take about a month to build it up to a high dose, and I’ll have to wait another month or so after that to see if it helps my OCD. If it doesn’t then I will have to come off fluvoxamine and build up sertraline again. I don’t want to live like this for another 2+ months. But I feel like I should keep fighting and try the fluvoxamine in the hope that it could help with my OCD. If I went straight back to sertraline I could be fairly confident it’d reduce this new form of persistent suffering, but I’d be in the same place OCD wise.

I’ve just taken my 4th dose of 100mg fluvoxamine. I can go up to 150mg in a couple of days. So far I haven’t noticed any change mental health wise, though I’ve been having a lot of trouble with insomnia. Insomnia is quite common for me but this has been particularly bad – the past couple of days I’ve spent about 4 hours trying to get to sleep. I know serotonin (which SSRIs work on) is connected to sleep, so I’m hoping that the extra insomnia is a sign of something happening serotonin wise, even if it’s not a good thing yet.

Writing this blog helps me feel a bit more like me, so I’ll probably be updating more regularly over the next few weeks as I try to carry myself through each day. Thank you for reading!

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.

Trigger warnings

As far as I am aware, the concept of a “trigger” originates with post traumatic stress disorder (PTSD) – certain images, topics, smells etc. can trigger flashbacks from the traumatic event(s). As awareness of this concept has increased, so has the use of the phrase “trigger warning”. This is typically used at the beginning of an online post that contains content that could trigger flashbacks.

Over time the phrase has been used more and more, to cover a whole range of things that might upset readers. This has made me think about the OCD triggers that I live with. Some of these are recent, and others have been present most of my life. All of the triggers are connected to my deepest fears, which I discussed in more detail in earlier posts.

Some of my personal OCD triggers include:

the colour red
the colour white
the colour yellow/cream (I don’t have this so much now but it used to represent cancer)
marks on the floor
stepping up or down, stairs
the number 6
the number 3
hearing someone else use “bad” language – this inevitably happens with any word that is or could be used as an insult. Sometimes it is ridiculous – words like “bum” or “poo”, or hearing the word “country” (because it has a bad word within it).
left
right
Christian language – words and phrases

Having OCD often means living with these OCD triggers, in a world that wouldn’t even conceive of them as problematic. My OCD triggers are pretty much always there – you can’t escape the colour red or change the language people use. Even when I have my eyes closed I am aware of left and right.

OCD connections to numbers and colours are pretty common, but they vary between people – a friend with OCD once told me the colour green was “unsafe” for her. For me green is one of the only “safe” colours. The colour blue and the number 2 are “safe” for me – blue is my favourite colour and 2 features prominently in my date of birth. I assume this is why OCD designated them as “safe” when it first began to emerge.

People with OCD aren’t considered when people write their trigger warnings. In many ways this is how it should be – avoiding OCD triggers tends to increase their power. Also, OCD triggers vary so much between people that it would be impossible to cater for all of us – everything would need to come with a trigger warning!

In light of this I usually save the phrase “trigger warning” for PTSD-related contexts. I’m not an expert on PTSD but I know that sexual and physical violence are often at the root of PTSD, so posts about these topics should come with a trigger warning. For other topics which might be upsetting I prefer the term “content note”, with one or two words about the potentially upsetting content. That way it’s possible for people to make their own decision about whether to read the post, but it maintains the original flashback-focused meaning of the “trigger warning” itself.

Long overdue post

Hello!

It’s been a while since I posted, but I haven’t forgotten about this blog. I’m going to write a bit of a stream-of-consciousness post today as a way of trying to cope, but more specific posts should be up in the not-too-distant future.

I was working on a Powerpoint presentation but I’ve had to have a break as my OCD was getting bad. It’s usually there whilst I’m working, but it tends to get stronger as I get more tired. In this case the biggest thing it’s doing is trying to stop me using interesting pictures etc. – the better an idea I have, the more OCD tries to stop me using the idea (i.e. tells me my worst fears will come true if I carry out the good idea).

Today I came across some statistics on the topic of how long term mental health conditions are more common amongst lesbians than straight women. This needs to be highlighted and addressed. However, as a side (slightly selfish) issue the statistic they gave for straight women – 4% – made me a bit sad when I thought about myself. The reason it made me sad is that it emphasised that, at least in the context of other straight women, most don’t know what it’s like to live with constant mental illness for most of their life. It suggests that although experience of mental illness per se is common, mental illness that won’t budge for years and years is not so common.

These feelings played into something I experienced a little while ago when working with a group of people with experience of mental illness. For context, it is useful to know that I am not entirely open about my mental health at work, as I experienced significant discrimination when I took that approach in the past (at a different place of work to where I am now). So within this group of people I was essentially perceived as a mentally healthy person, asking for the opinions of people who have experienced mental illness.

I asked them to look at various images and indicate which ones would be best to represent the work my organisation is doing on the topic of mental health. I had my own personal (private) thoughts about these images – I felt that mental illness was best represented by a picture I found of the brain inside chains, and by other images representing how trapped, crushed and isolated I feel when thinking about my mental illness.

To my surprise the group didn’t like the images I personally favoured, in fact they disliked them. They preferred images representing people, and colourful, positive images. I suspect the difference was partly due to differences in what we were seeking to represent with the images – they were more focused on how our organisation might be represented, whereas I was more focused on how illness itself may be represented. However, another reason for the difference was (unknowingly) expressed by one of the participants – that he would identify with the brain in chains image if he was currently unwell.

The whole situation upset me a bit, because the way I saw it was – even these people who have been chosen specifically for their experience with mental illness are more mentally well than I am. I have since understood this wasn’t exactly what was going on, but it’s a good illustration of the feelings that came up when I read the 4% statistic above.

I often forget to some extent that other people don’t have to live with their worst fears every minute of every day, with no break. That even people with experience of mental illness are not usually ill for years and years. When I remember this it gets me down a bit.

A friend who has been hospitalised for psychosis in the past has recently developed OCD symptoms. They told me that psychosis was easy compared to OCD. It reminded me that it is very hard to live with OCD, and that coping as best I can with almost constant OCD for the best part of 20 years is a big achievement. Those of us with OCD are stronger than most people know.

OCD targets the things people care about most

OCD is a deeply unpleasant condition; it targets the things a person cares about most deeply and turns them into a subject of intense fear. For example:

A single parent devoted to their child may have OCD thoughts that ‘say’ they want to sexually abuse their child. This person would never abuse their child, in fact it is the most abhorrent thing their brain can come up with. This makes it the perfect target for OCD.
A child who has lost a parent may have constant OCD thoughts that they will somehow kill their other parent, or be responsible for their death.
A person who is deeply religious may have OCD thoughts which involve blaspheming against their god.
A nurse whose primary goal is to care for his patients may be so afraid of passing on an infection that he washes his hands until they bleed.

The following is a more detailed example of the way that OCD focuses on the things that matter most to the person with OCD. It’s a personal example from when I was about 14. I was struggling a lot with life, and one of the only places I found a small amount of respite was in the music of my favourite band. The opportunity arose to go and see them live. My OCD ‘told’ me that if I went to the gig then the bassist’s 2 year old daughter would die. There was no logical connection – I was not going to be anywhere near his daughter and I didn’t think I’d be passing on any germs or harming her in any direct sense. I just ‘knew’, because my OCD ‘told’ me, that if I went to the gig she would die, and it would be my fault.

This is an example of magical thinking, which is a so-called ‘thought error’ that is common in OCD. I can still remember how terrified I felt. I desperately wanted to see the band, but the idea of being responsible for the death of a child was horrible. This is an example of excessive feelings of responsibility, or ‘inflated responsibility’ which is also common in OCD. In the end I did go to the gig, and the bassist’s daughter was fine.