Some migraine symptoms are just bizarre…

If you know me you know that I don’t have garden variety migraine. I have hemiplegic and brainstem migraine, and some of the symptoms I get are just bizarre.

Over time, I have gotten better and better at identifying the early warning signs. And linking particular warning signs to what kind of symptoms are likely to follow.

For example, my brainstem attacks usually being with my sense of smell going haywire. Doctors will tell you that sense of smell is heightened for some in a migraine attack – what they don’t tell you is that you can also lose your sense of smell (oh hi multiple COVID-19 tests!) or smell stuff that isn’t there. I usually get all three in sequence: first I can’t smell anything, then I smell stuff that isn’t there (usually farm smells from my childhood – wheat, steel, wet sheep etc.), and then, as the attack progresses and the other symptoms kick in – speech gets slurry, decreased consciousness, and so on – I can smell everything in a 20 block radius like it’s right under my nose.

If it’s my taste that goes awry, rather than smell, that warns of a particularly bad attack incoming. These are also brainstem attacks, but the symptoms following loss of taste, then tasting usually something metallic, usually involve my heart and lungs slowing down, significant chest pain, and an obligatory trip to emergency where they put me on monitors and oxygen and wring their hands for a few hours.

The eye twitch is another odd warning sign that scares me. I don’t get it too often, but it’s a really intense eye twitch that makes it difficult to see/drive/do anything – and it’s visible to others, meaning I have to manage their freak out as much as my own. The decline from the eye twitch to quick progressing full side paralysis is rapid, so I don’t have a lot of time to get myself somewhere safe. This is sometimes a hospital visit required attack too if I can’t manage the paralysis.

Sometimes my first warning sign of a hemiplegic attack is falling down. Always a good look when in a public place. Usually it’s only after falling down that I realise that my leg is numb, and that’s probably why I fell down. I call these my sneaky hemiplegic attacks.

But the strangest one I think is the warning from my left hand. See that pink and puffy bit between the knuckles of the index and middle finger? That. It’s like an inbuilt warning light. This tiny, otherwise insignificant part of my body swells and glows red. Ding ding ding! Migraine attack incoming!

I’d love to know what on earth is in that part of the hand that is linked to migraine. Or perhaps it’s just an oddity about me. The attack that is linked with this warning sign actually has head pain – most of my attacks don’t – as well as extreme fatigue, nausea and brain fog, and usually some left arm weakness. It’s also the earliest warning sign I get, it’s usually a good 24 hours from my in-built warning light doing it’s thing to other symptoms starting. So it’s the oddest warning sign, but this one doesn’t scare me.

All of us have a unique experience of migraine. And sometimes you just have to laugh at the bizarreness of the symptoms migraine can dish up.