I’m rationing my epilepsy medicine and I’ve already broken bones

A minute or so later, I’ll wake up dazed and confused. I always get a pounding headache too, like someone’s stamping on my brain.

Sometimes there’ll even be blood in my mouth from biting down on my cheeks. Or I’ll lose control of my bladder.

This is what it’s like when I have a seizure.

Unfortunately, they’ve become more violent recently and a shortage of my epilepsy medication throughout the UK is only making everything worse.

My diagnosis came about after a particularly nasty bang to the head in February 2012. It completely knocked me out and I woke up in the hospital over five hours later, feeling confused and sick.

Two months later, I was celebrating Easter Sunday at home with my husband, Andrew, and children. One moment, I was in the kitchen counting out the chocolate eggs to divide them up for the kids and then the next, I was coming round on the floor with paramedics talking to me.

On top of that, my head was bleeding after it bounced off stone tiles before I hit the ground. The weirdest thing was, the paramedics were trying to ask me what my name was but I couldn’t remember.

I was terrified – and so was my family. I was admitted to hospital and stayed for a few days for observation. That’s when a neurologist said the seizure could have something to do with the bang on my head a few months earlier. Within a few days, I felt fine. 

Unfortunately, I had my second seizure by June and was admitted to hospital again. But it wasn’t until my birthday a month later that I had my third seizure, which is when I was given the diagnosis of Temporal Lobe Epilepsy (TLE).

I was prescribed lamotrigine – tablets that I take twice a day – which I started on a low dose. It took a while to get the dosing levels right and I’ve had to increase it ever since, but the seizures meant I had to give up driving (as you have to be seizure-free for a year) and pause work as a teacher in early years at the time.

Over the years, my seizures have come and gone to varying degrees – with a particularly rough patch around 2016, then again in 2020. I have a tonic clonic seizure – the ones you typically associate with epilepsy, including unconsciousness, uncontrollable jerking and body stiffness – around once a month.

I also get both partial and focal-aware seizures a couple of times a week, where suddenly I’m not there mentally and then I’ll make weird sounds or do things like pull at my clothes.

I could be watching TV or walking down the street and then my mind will go blank, only to snap out of it a few moments later with a pounding headache.

I don’t know why the seizures have been worse since October 2020, but it’s got to the point where I’m scared to go out on my own.

I’ve had a seizure on the train by myself before, which was awful. As soon as I tasted the copper in my mouth, I freaked out. Sure enough, I blacked out and the next thing I remember is being wheeled off by paramedics at the next station.

The seizures are bad enough, but the embarrassment of it happening in public makes me feel even worse. 

But just before Christmas, I went to pick up the prescription from my local chemist in Bridlington in Yorkshire, but they only had 25mg packets, not the 100mg ones I use.

So I went to a town over and one of the chemists there had some of it but not enough. That’s when I rang my epilepsy nurse, who said there was a shortage but there wasn’t much anyone could do. I also can’t just switch to a different one because this is the one I’ve taken for more than a decade.

Then, last week, I tried to order my prescription again and it would only let me order one pack of 25mg tablets. That would only last me less than 10 days.

As a result, I haven’t been able to take the full recommended dose of my medication, which has meant that my seizures are getting more violent. I can’t tell that it’s happening, but Andrew said I’m contorting and shaking more.

In fact, I had a seizure last Sunday where my muscles tightened so hard that it pushed my kneecap out, which I landed on and fractured. A week earlier, I had another one and dislocated my shoulder, so I’m off work as a lecturer at the moment.

So it feels like my life is just on hold in this vicious cycle.

In fact, the Epilepsy Society confirmed on 10 January that all strengths of lamotrigine tablets manufactured by Accord Healthcare ‘are in limited supply until March 2024 and 200mg tablets are currently out of stock until around the same time’.

It’s not just epilepsy medication though, medical shortages in the UK have doubled in the last two years. This is due, in part to a weaker value of the pound since Brexit and a government policy of taxing manufacturers.

For more information about epilepsy medication shortages, visit Epilepsy Society’s website here or call their confidential helpline: 01494 601 400

Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk. 

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