The Mindful Migraine

OK, so the last couple of weeks I have been travelling a detour, looking into books and beliefs and gawking at AI making me a podcast episode… it’s now time to return to the main road and talk about migraines and mindfulness. So, today’s post is about the source of my chronic pain: hemiplegic migraines.

Let’s start where many stories start: Ancient Greece and Rome (i.e. Latin).

The root word ‘-plegia‘ means ‘to strike’ or be ‘stricken’ with immobility. In other words, become paralyzed. It’s why people in modern times have a medical event called a ‘stroke’. When you add prefixes to the word, it explains which part of the body is affected. For example, ‘quad-‘ means ‘four’ which means all four limbs are paralyzed, whilst ‘mono-‘ means only one is. ‘Para-‘ means a person is partially paralyzed, typically on the lower half.

‘Hemi-‘ meanwhile, means ‘half’, as in ‘hemi-sphere’ (half-sphere), and in this case, it refers to one side of your body becoming paralyzed, either left or right.

[If we want to get super technical, the difference between ‘hemiplegia’ and ‘hemiplegic’ is the suffix. ‘-ia’ refers to the condition, ‘-ic’ refers to the person who has the condition. At the risk of annoying people (including myself, given I just wrote about how debilitating it is to suffer from chronic pain and not be believed), the phrase that jumped into my mind to explain the difference was: a ‘hypochondriac’ always thinks they’re sick, which means they suffer from ‘hypochondria’.]

‘Hemiplegic’, or ‘hemiplegia’, means one side of your body becomes paralyzed as if you have had a stroke.

‘Hemiplegic migraine’ means that during a migraine event, one side of your body struggles to move for the duration of the migraine.

For me, I only have a full-blown hemiplegic migraine a couple of times a year (and more ‘mild’ migraines throughout the year). When I have hemiplegia, it is always the right side. The right side of my face feels numb, and my right eye goes red, and the eyelid starts to droop so that it becomes hard to see out of that eye. One side of my mouth also feels as if it’s slumping and it becomes hard to talk. My right arm goes limp, and whilst the paralysis is not so bad that I cannot stand, I do have to drag my foot along the ground and really concentrate to lift it off the floor.

I’ve never recorded myself having an attack but there are several online video clips where you can see the stroke-like appearance people get during their hemiplegic migraine.

Here’s a couple of examples: Instagram1 / Instagram2 / Instagram3 / YouTube1 / YouTube2 / YouTube3

[Out of curiosity, I went back to my past post – “My worst migraine ever” – and noticed that I referred to myself limping and crawling from the bed to bathroom and back again… and then, ugh, how I broke three of my own teeth by clenching my jaw so hard… sigh.]

Fortunately, once the worst of the migraine attack is ‘over’, the paralysis fades and full-movement typically returns. As terrifying and troubling as it is, the symptoms are only temporary.

According to the Oxford English Dictionary, the earliest record of the phrase ‘hemiplegic migraine’ (which doesn’t make it the earliest actual migraine), was in the 1600s in a translation by someone called Philemon Holland.

A quick tour of the internet revealed a few more fascinating facts…

But first, whilst I am now Dr Linda and do my best to ensure my source material is as credible as possible, my expertise is in architecture not medicine or science, and much of what I write about is based on personal lived experience which may not be ‘typical’ of this condition, so:

Disclaimer – please remember that this is NOT a medical website – it is critical that if you are experiencing paralysis you speak to a healthcare professional rather than take advice from the internet.

Ok then, assuming you’re feeling ok, let’s get started.

As is often the case with migraine information, the websites seem to be all saying the same things, borrowing off each other with only slight differences, so I’ll jump between sources to give them all a fair go, but you could probably stick to one site if time is tight and you want to know more.

HeadacheAustralia.org states: “Hemiplegic migraine is one of the most complex and debilitating forms of migraine, creating significant challenges for those who live with it. […] This condition is fundamentally a neurological disorder, driven by genetic factors that affect how brain cells communicate with each other.”

Interestingly, they note there are 2 branches of hemiplegic migraine: on the one hand ‘familial‘ which means at least one direct relative also experiences hemiplegia during migraines, which means you almost certainly inherited the genetic code that triggers the condition. The other, is ‘sparodic‘ which means that without the family connection, it is your own genes that have spontaneously ‘mutated’ to cause the issues. The way that you are treated remains the same regardless of which type you have.

[I know for sure that my mother had migraines, and she was able to diagnose my ‘first ever migraine‘ whilst the school teachers who were with me assumed it was travel-sickness, home-sickness, or willfulness… but I don’t recall her being paralyzed, so I might be the mutant!]

ClevelandClinic.org explains that the cause of hemiplegic migraines is probably “Overactive nerve cells […] Specifically, a change in your nerves known as cortical spreading depression […] Cortical-spreading depression changes this electric charge (depolarization). It’s like a slow-moving wave that passes from one side of your brain to the other, disrupting the normal pattern of electric charge that your nerve cells carry.”

The sorts of things which trigger hemiplegic migraines, are the same for most migraines; stress, fatigue, bright lights, physical exertion, certain foods and smells, and/or head trauma.

[Click here for more posts I’ve written on TRIGGERS]

OK, so one thing that Cleveland Clinic says that is a little concerning is this: “Severe complications are rare but may include: Seizures / Memory loss / Personality or behavior changes / Problems with cognitive development (intellectual disability) / Difficulty with speech and motor skill development among children / Coma.”

Yikes.

I’ll stop complaining about my droopy eyelid…

Or pay more attention to it and monitor it more closely moving forward.

Medications that are considered [again – speak to a doctor people!] include beta-blockers, anti-depressants, anti-seizure medications and Botox injections.

MigraineTrust.org is the only site that I noticed who had a real-life person explaining the real-life effects of the condition. Abigail tells of her first event; she stayed home from school because she felt unwell, but as the day continued, she found it hard to walk and noticed her face drooping and went to hospital. A pediatric consultant ran through some possible options; stroke, Bells Palsy, or a brain tumor, but scans revealed she was all-clear and eventually, migraine was implied. She talks of the fear, confusion, occasionally having to use a wheelchair and the multiple trips to the doctors. She ends her account stating things are better, however; “the social effects are still apparent. The second guessing and doubt from employers still remains […] I tend to come across as an empowered young woman who has no struggles but this is a battle I’ve been fighting for years.”

In closing, I’ll borrow from Abigail’s sentiment – even if you have a hemiplegic migraine diagnosis, you are perfect just the way you are, and if she (and me!) can overcome the difficulties of this condition, you can too.

One last reminder: the websites all repeat the same thing – because the symptoms of hemiplegic migraine can overlap with other, sometimes life-threatening conditions, such as stroke – PLEASE speak to a specialist in order to be accurately diagnosed.

Take care taking care.

You got this peeps,

Linda xox

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PS – strange aside – I was trying to think of the right picture to put at the top of this post… and for some reason, the image of a tree which appears to be half alive and thriving, and half withered and leafless, felt ‘right’… albeit a bit sad and abstract… my aim was to be real not depressing – even half a tree is still a tree – keep going and keep growing friends! xox