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Derailed (First published Sep 2017)

Things have apparently been going too well. My blissful transition from anxiety-wracked nerdy under-achiever to contented, thankful, hopeful individual has been rudely sidetracked by something known as Chronic Migraine. This insidious and little understood condition is extremely distressing and I have found myself ill-equipped to deal with it or its wider effects.

I am a creature of habit. As an Aspie, schedules lists and patterns weave the aspects of my life together into something that I can navigate reasonably successfully. I rely on reliability. But my reliability has been taken from me, and it has been devastating.

To explain: I had only had migraines rarely in the past, perhaps once every one or two years, and they were fairly mild: a few visual fireworks , a nasty headache tempered by a feeling of elation once the event was over. Then, about a year ago, I began to have severe migraines with 'aura' (a visual disturbance that take a number of forms, but in my case, was a flickering zig-zag pattern that started in the centre of my field of vision but soon expanded to fill it entirely, for at least 20 minutes.) This would be accompanied by nausea, disorientation and a loss of verbal dexterity (I would struggle to find the right words). This would be followed by up to 8 hours of severe headache, centred in one or both eyes. I would spend the next day (if spared by another migraine) in a mindless fug - my thought processes muddled and slow, de-motivated and depressed.)

Within a month of having the first migraine, they were occurring almost every day.

My life stopped. I could not work. I couldn't drive. I couldn't manage a decent conversation. I couldn't watch the TV, read, or work on my computer. I couldn't work on my book, draw or paint or write my blog. I couldn't go outside in the sunshine or open my eyes in the bathroom thanks to my striped flooring. Worst of all, I couldn't think. I have let people down, missed deadlines, broken promises and failed to turn up. All cardinal sins to an Aspie. I feel as if I have regressed to the sorry state I was in when I was 20: No confidence, no prospects and no idea. Only the stalwart support of my amazing husband and son have kept me afloat, and for that I am extremely grateful.

I have always avoided taking medications - I seem to be particularly sensitive to their side effects and have suffered many that were quite severe and rare. The drugs available for managing chronic migraine come with lists of side effects that are almost more frightening than the thought of a never-ending migraine. Over the course of the next 6 months I tested medications and compared side effects and efficacy. Nothing seemed to work and everything made me feel terrible. It is testament to my desperation at this point, that I settled on a regimen that blocked only most of the effects of the migraines, but left me dizzy, faint, prone to blacking out. (Being unable to drink alcohol or go diving now seem minor considerations.) Now, however, the medication is failing, the migraines are back with a vengeance and I am back at square one.

I find myself wondering whether I can realistically continue to work at all. How can I offer services when I am so unreliable? I cannot convey quite how horrendous this concept is to me. This is the one thing I had complete confidence in: My ability to get stuff done. The one quality of mine that was never questioned by anyone: I could be relied upon.

So, I find myself about to embark on a new regimen of scary drugs (the list of instructions and side effects for this one took a full 45 minutes to read through!) that will lessen the effects of the migraines at the acceptable risk of liver failure, kidney stones and blindness. As I sit here, feeling my neck stiffen and watching the tell-tale sparkles appear at the periphery of my vision, I hope I have made the right choice this time... I am still waiting to see a neurologist, a year down the line, but there is no guarantee they will have anything helpful to tell me about this debilitating and misunderstood condition.


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Chris Russell
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