Yes I was thinking

Ever wondered what it’s like to have a migraine? Lucky you.

When a migraine is preparing to whip up a small storm in my head, there’s not much I can do about it except retreat to a dark room and try to sleep through it.

Migraines typically have four stages:

1. Prodrome – changes in mood and appetite in the hours/days before an attack (indistinguishable from my normal life)
2. Aura – sensory disturbances that can last up to an hour (mind bending)
3. Headache – you guessed it (ouchy)
4. Postdrome/recovery – tiredness and dizziness which can last a few days (grouchy)

For me, an aura is the first sign of an attack. My migraines like to keep me guessing by trying out different sensory disturbances each time so that I can’t be sure whether it really is an aura or just an odd sensation I’m experiencing for another reason. Very cunning.

I was eleven when I first experienced a migraine. I suddenly felt like my arm didn’t belong to me anymore. I had reached out to pick up my lunch box at school but watched as an imposter arm swooped in and stole it from me. I think I vomited before my mum came to pick me up and take me home.

At 13, the left side of the head teacher’s face turned into fuzzy zigzags as she delivered the school assembly. I looked around and thought everyone had developed the same bizarre affliction before realising that the affliction was of course mine.  I tried blinking the zigzags away like an afterimage but it didn’t work. A friend had to guide me along the corridors and help me out of school while I shut my eyes until normal vision returned.

The zigzags are the worst kind of aura. The memory of them alone is aversive. Once when I was in bed during the headache phase, I was so desperate to not think about the zigzags that instead I thought really hard about a gross squished mouse I had once found.

An attack once started while I was writing in a physics lesson. The onset of the aura was easy to spot in my exercise book as the point mid-sentence where my handwriting started to drop off the line and fall down the page. I couldn’t write ‘home’ on the sign out sheet at reception. The ‘h’ got turned backwards and I couldn’t make the letters stay in the box. The mental ruckus wreaked by the migraine was clearly interfering with my ability to write. And no, I’m not having a migraine right now, thank you very much.

My foot once went numb while I scanned the departure boards at Victoria station. It took me five minutes to be sure it was the start of a migraine attack rather than just the result of a tight shoe. I quickly bought some water and boarded the train but the aura was sadly along for the ride. During the 40-minute journey, I felt the numbness migrate from my foot, up my leg, down my arms, through my hands and eventually reach my mouth, eyes and tongue. The numbness had finished its tour by the time I got to my station where my partner met me to walk me home. I could speak only very slowly and it was hard to think of the right words.

For a word that sounds so cool, auras are very much not cool. Also, if a stranger asked me what was wrong and I said ‘I’m experiencing an aura’ I don’t think they would be inclined to help, thinking I was either a New Ager or on drugs. It needs a more visceral name like ‘neural storm’ or ‘brain wane’. Other suggestions welcome.

The worst attack I ever had snuck up on me in the middle of a family day in London for my mum’s birthday a few years ago. I started to feel like I had super hearing on the tube. I knew for sure that a migraine was afoot when my hand started going numb 10 minutes later. I took a 40-minute Uber home through central London (luckily Mum paid). I wish I could have enjoyed the luxury but I had to bury my face in my hands the whole way home. The headache phase was intense and I was frustrated and upset to miss out on my mum’s birthday meal (my siblings assured me it was extremely delicious and the best meal they’ve ever had ever.

Migraines are debilitating in the aura and headache phases and overwhelmingly frustrating in the postdrome phase. The postdrome is the worst part, lasting 5-7 days while my brain struggles to resume normal service after the disruption. I constantly feel like I just need a strong cup of tea or a slap around the face to get me going again but nothing works. Every task is made harder by a stubborn brain fog and it is incredibly frustrating. I had four migraine attacks last year so I spent at least 20/365 days in this sorry state. Still, I remind myself that ‘this too shall pass’ and am grateful to not have migraines more often.

The best medical guestimators think migraines could originate from a dysfunction in the brain stem. One article says “In patients with migraine, the brain does not seem to tolerate the peaks and troughs of life well.” – which is pretty funny. It means that both stress and the relief of stress can be triggers. This explains why I got a migraine on the morning of A-level results day as well as on a chill day out with family. Migraine sufferers are encouraged to maintain regular habits, not expose themselves to very stressful events or to relax too much. Advice that is impossible to follow for anyone wanting to live a life.

Occasionally, I positively invite a migraine to attack me, like the time I didn’t bring any water with me when I went for my first 9-mile run. That was one hell of a trough to dig myself so I got a migraine within an hour of getting home. That one came with the guilt and shame usually reserved for a hangover.

Sensitivity to migraines changes from day to day which means something that could trigger a migraine one day won’t the next. I seem to be particularly sensitive to exercise and the slightest dehydration for some reason. It’s irritating to feel so delicate. My brain apparently requires Mariah-Carey level pampering to not throw a Naomi-Campbell level tantrum.

I worry about what would happen if I got a migraine while driving somewhere. Does the AA cover breakdowns of the mind? What if I have a migraine a week before an important meeting or presentation and I’m still in the dum-dum phase?

A cure for migraine would be great but I’d settle for understanding why they happen. Maybe the reason we don’t know more about them despite them affecting so many people is because 85% of chronic migraine sufferers are women?