More sensory weirdness

Before my migraines became as chronic as they are now – when it is difficult to tell when one migraine ends and the next one starts – I used to get all the clearly defined different stages of a migraine: prodrome, aura, migraine, postdrome.

I’ve had migraines since I was a teenager, they occurred about once a month then, and then in my twenties – oh those glorious twenties – I got them fairly rarely; a handful of time a year. Because I knew my triggers and my warning signs, I could manage them fairly well, and rarely lost a day to a migraine. (Oh those were the days…)

After I turned thirty, the migraines started progressively getting worse. I started having prolonged prodromes – sometimes lasting almost two weeks – when things were a bit whacky and I knew there was most likely a migraine coming. Sometimes I had prodromes and auras that never turned into migraines, but gradually the migraines started getting worse and I started needing prescription meds to manage them. At first the triptans did wonders, but then they too stopped being very effective. The postdromes got worse and worse as well, with me gradually feeling like I needed a day, and then days, to fully recover from a migraine.

One of my funkiest prodrome symptoms, which I’ve had for a long time, is that my pupils go two different sizes. Sometimes it’s subtle, sometimes it’s a fully blown ‘one tiny pupil and another fully enlarged one’ situation. A bit over a year ago, when the migraines started being more chronic and when I first complained to a doctor that I was starting to have migraines that lasted 10-14 days (when taking into account all phases) and that those now occurred twice a month, meaning I lost at least 20 days a month to migraine symptoms, I unintentionally freaked out my boyfriend of less than a year cause I kept having pupils of two different sizes, and apparently that was quite unnerving.
Well, most often migraine symptoms are invisible to the outside, so at least in this case I have external proof that something’s going a bit haywire in my brain. (And I’ve had an MRI scan, no I don’t have a tumour.)

(Thank goodness also for a supportive boyfriend and that my weird symptoms did not put him off, and he is now my fiancé.)

I get visual auras rather rarely, but have regularly been known to smell things that aren’t there. I did once see a curtain of stars come down from the sky when sat at a park bench on a cloudy day. If I was religious I probably would’ve interpreted it as a divine sign. Instead, another time, when I was having another crazy visual aura, my neuroscientist brain kept thinking, damn that looks like a party of astrocytes going absolutely bonkers.

I often get visual and auditory sensitivity, which means that sudden or bright lights feel intensely painful (see also my post “Hypersensitivity“), or when normal sounds suddenly feel like they fill my skull in an unpleasant way. In the ‘lead-up phase’ to my migraines becoming chronic, these symptoms often came and went, and all there was to it was that I knew there was probably a migraine coming at some point in the next two weeks. Now, these symptoms occur on a daily basis, and I’ve learned to head them as signs that I need to take things slow and avoid further exertion.

(This is why you’ll see me run around with sunglasses even if it doesn’t seem that bright, and why I wear funny looking earplugs that decrease the ambient sound inputs to my ears by about 20dB. Thank you Maisie Hill for drawing my attention to Loop! On days when my symptoms aren’t too bad, these are a lifesaver and allow me to go out into the world for at least a little bit and not needing to worry about sensory stimulation in the form of noise overwhelming my brain.)

I’ve been sensitive to smells all my life; I’ve never been able to go into shops that were heavily perfumed or where a lot of incense was burning. Strong smells pretty much always guaranteed a headache for me, and now it’s even worse.

But the weirdest one of the sensory sensitivities – or maybe I just think so now because this is a new one – is that even touch can feel different. This is particularly heartbreaking because being gently caressed by my fiancé often feels unpleasant. With this one again it isn’t the touch as such that is painful, but rather the touch being devoid of the usual pleasant sensation that brings about internal pain. I once started crying when we were trying to be intimate and I wanted so badly for things to feel the way they used to but all I got was an intense “SOMEONE IS TOUCHING YOU” signal from my brain. If you’ve ever felt sensitised to light or sound, imagine instead your sense of touch being amplified and clouding everything else that is going on. It is as weird as it sounds.

If it wasn’t so miserable, this whole experience would be really fascinating.