I've talked in the past about the problems I've had post-stroke with some situations. In particular three places:
- supermarkets, and in particular Sainsbury's in Coldhams Lane, Cambridge
- long car journeys
- noisy social situations
I described all three of these in another web page where I was reporting my symptoms post stroke. It then read as follows:
Things Which Mess With My Head
Various things do this, and the way it's messed up are hard to characterise, but they include:
During my time at the Oliver Zangwill Centre (OZC) this was something I discussed with one of their neuropsychologists, Fergus Gracey. He thought that Cognitive Behavioural Therapy (CBT) might help with some of these symptoms.
Fergus' hypothesis has that what I was describing in relation to Sainsbury's looked to him like it fitted the "panic attack" model. The way this works is that you misinterpret a genuine physical symptom as something else and react to it by employing a "safety behaviour" to prevent it. The problem is that doing so makes the anxiety worse and creates a vicious little feedback loop.
Fergus has a diagram for this which I've tried to reproduce from memory as best I can using "ASCII art":
I should expand a little more on some parts of this. The physical symptoms I got included dizziness and the inability to think clearly. It felt like all the noise and visual clutter were overwhelming me and I couldn't cope with it. I was attempting to cope with it by wearing sunglasses, which did seem to help initially, and by attempting to relax and "tune out" of the environment.
The sunglasses started after reading a discussion on the Usenet newsgroup alt.support.epilepsy where another epilepsy sufferer reported it helped her in very bright environments like supermarkets. What made me think it was needed at Sainsbury's but not at other local supermarkets is that they are the only ones using very high colour temperature (i.e. very bright, very white) lights.
Given that I do have genuine neurological symptoms, not least epileptic seizures, one has to proceed with a little caution here but there were aspects of my behaviour which were suspicious when viewed from a straightforward neurological perspective. Fundamentally I only got these symptoms badly at one supermarket, and the sunglasses, my attempts to relax and "tune out" of the environment, and in some cases to actually leave the store before the shop was completed all looked like potential safety behaviours.
We spent what seemed initially like an inordinate amount of time talking over the episodes I was having at Sainsburys. The symptoms, which often started prior to getting to the store, were teased out and we discussed my interpretation of them.
What was most interesting for me was the discovery for me that I associate dizziness with death at some level. When the world starts to cave in, as it did before my last seizure, and as happened several times in the first summer after my stroke but without a seizure occurring at some level deep in my mind there was, I think, a strong feeling that this was the end. Software crashing. My mind switching off, never to restart. Game over player one. That is how, at a rational level, I view death so this sort of dizziness could be a marker that I was going to die.
At Fergus' suggestion we experimented with this, making me deliberately dizzy by turning round and round. It didn't work quite as Fergus hoped however. I didn't feel threatened by this at all, as I suspected before we tried it my rational brain knew full well that this wasn't threatening so I didn't get any reaction to it.
Fundamentally however I think what we were doing was looking at whether there really was any rational reason for being concerned about the symptoms I was getting. Were they a warning of an incipient seizure? Looked at rationally the answer seemed to be - probably not. I only remember the seconds before one of the three seizure episodes I've had, but it was nothing like the sort of symptoms I was getting in Sainsbury's.
Trying It Out
Having got this far the next step was clearly to try dropping the safety behaviours, the most obvious one being the sunglasses. So we agreed that I would try it and report what happened. This is my report, taken from my stroke diary entry:
This week on Tuesday we discussed what to do next and I suggested it was time to do a little testing of the hypothesis. So I volunteered to try shopping without the sunglasses today.
The first thing I noticed is that the initial symptoms: tightness across the back of the scalp and a feeling of mental uncomfortableness started at home half an hour or more before we departed, even before I'd really consciously thought about what we were proposing to do. This in itself seemed like a good sign - in that it suggests it's at least partially "in my head" rather than just being down to Sainsbury's.
In the car going there it was getting worse and I consciously thought to myself "this is just a panic attack, nothing really important" and it faded a bit.
It was going into the store which was where the "fun" really began. It's hard to describe but at the time it seemed like my brain was "buzzing" (in retrospect I think "roaring" might be a better description) and drowning out everything else. I mean that literally. I could almost hear it! It was quite unlike anything I'd experienced before and seemed to be occupying my whole brain, filling all my senses. It was scary but unlike before when I've had problems at one level my brain was going "this is just a panic attack, nothing really bad is going to happen" and after a minute or so it faded away. Superb. I remember grinning inanely.
From there on it was coming and going as we went around the store, but only at the same level I usually get with glasses.
I think this has got to be good news.
And so it proved. On subsequent trips to Sainbury's I felt slightly scared that I would have problems but I didn't and after a couple of visits I realised once we'd left that I'd not taken my sunglasses in my pocket, nor even thought about them.
I can now go into Sainsbury's without any problems. It still a hellhole, but that's supermarkets for you, and I sometimes get the sort of neurological symptoms I get in other stressful environments, but this is unsurprising - it is a stressful environment. But fundamentally what has changed is that getting symptoms carries no "baggage" any more. It's just what I'm like anywhere else too.
Social Interactions and Car Journeys
We were going to then go on to explore these two areas. I had at least one experience post "fixing" Sainsbury's which made me think that maybe there was a different problem there. However subsequent visits to the pub, restuarants and long drives (as a passenger) have been just fine, with nothing special about them at all. I tire easily, but that's not unsurprising, I tire easily in general now, whatever I'm doing, but I'm no longer getting symptoms like I was.
This is an aspect of the CBT which surprised me, but Fergus has described a lot of the way this stuff works as re-programming, so I can only think that fixing my brain's misinterpretation of symptoms in Sainsbury's has affected the program enough that my brain is applying it in other places too. Which makes a lot of sense from a programmer's point of view: it's using the same function in more than one place. Good code re-use.
I think it's worth dwelling a little on hypervigilance as I think this is key to the problem I was having, and in a more complex way than I've explained so far as I think it involved Beth too. One of the safety behaviours we identified was "hypervigilance" i.e. I was spending too much time thinking "am I OK?" which in turn re-inforces that feedback loop. Fergus encouraged me to try to stop doing this (as I pointed out it's a bit like being told "whatever you don't think about elephants for the next five minutes" but I tried).
There was another aspect to this too. Something I've not mentioned before is where Beth fits into this. It took me a long while to work this bit out, and it actually came after the event. I only ever went to Sainsbury's with Beth (inevitably as I couldn't drive while I was having CBT because of my seizure history) so she was always with me. Beth had her own problems with my having had a stroke which were, in part, down to her keeping an eye on me too much. In other words she was being hypervigilant too, but about me. And I knew she was doing this.
She also underwent CBT at the same time I did, and it's worked well for her too. She's no longer watching me all the time. I didn't realise it until she stopped doing it but I think it was in turn re-inforcing my hypervigilant behaviour.
Keeping on the Straight and Narrow
As I write this I'm now at the end of the CBT course and I have one more session with Fergus to go just to review where we've got to. One of the things we talked about in our last session was the danger of falling back into bad behaviour or new variations on the theme and writing up the therapy in this article was one of the ways I suggested I could remind myself.
The fundamental thing I need to watch for the future however is those safety behaviours. Now I know the signs to look out for I need to assess any new behaviour which I appear to be doing to remediate symptoms to see if it's genuinely useful or it's actually re-inforcing the symptoms.
One of the things that initially caused me some problems with this whole journey was I didn't like the word "panic". "I don't do panic" I memorably said, early on, "I can't see the point of it" and we agreed (or so I thought at the time) that the issue was just one of semantics, in the same way that the "attention" and "arousal" in relation to my brain injuries have a different meaning to people in the field to that which they have in normal speech.
However it turns out that there was more to it than this as my reactions were not exactly textbook. Firstly, and most importantly, discussing the experiences I was having and, especially, when we talked about withdrawing the safety behaviour I should have experienced the same symptoms I had in the store. Fergus was particularly struck by my reaction when he steered me towards the thought that the next step was withdrawing the safety behaviour. My reaction, to acknowledge that this was obviously the next step, without it bringing on any symptoms, was not typical.
I also get the impression, although I'm not sure that Fergus has said as much explicitly, that both my experience in Sainsbury's on the first visit without glasses, especially its magnitude (it surprised the hell out of me too), and my reaction to it were not typical either.
However the bottom line is that using the panic model has worked: I can go into Sainsburys without problems now. I do get some neurological symptoms but they no longer carry any "baggage" with them. Why this should be, when I don't exhibit some of the classical panic symptoms is a good question. I have two theories:
- It may be that the damage to my attention system is preventing panic working properly (which is a result if so).
- It may just be that it's down to the way my mind works: I am fundamentally a scientist. My mind works that way. I really don't do panic (or perhaps I'm just very good at suppressing it).
Whatever the reason it certainly suggests that maybe the actuating element of the panic model for everyone actually doesn't rely on panic per se but on more subtle mechanisms below that. What the truth I really can't say, but it's interesting. Interesting enough that Fergus is going to write it up as a paper, a prospect that I'm looking forward to greatly especially as he's offered me the opportunity to be listed as an author.