Rebekah's story

RebekahSince I was around nine years old, I’ve suffered from hemiplegic migraines. This involves semi paralysis, visual disturbances, speech difficulties and can look very similar to a stroke. I have an attack on average about once every three months although it isn’t often as easy to predict as this. On numerous attacks I’ve required medical assistance and been taken into hospital. I’ve tried numerous medications and still at the age of 21, have yet to find something that works.

I’m currently a student at the University of Cambridge which has made my attacks over the past few years more difficult. It’s interrupted my work, my social life, my degree and put my final exams in jeopardy. As I can’t often communicate well or look after myself in the instance of an attack, I’ve often been on my own and it’s been scary for other students who have found me like that. It’s previously made me feel like I can’t be independent, like I have to be so much more careful than others my age, and mostly it’s made me feel scared. You just feel completely helpless.

People often complain of migraines but as a catch all term for headaches rather than as an actual migrainous attack. A migraine attack is fully debilitating, excruciating and completely terrifying. My family and friends have seen me screaming, sobbing in pain and begging for help. I’ve broken and shattered bones and had them repositioned, I’ve burnt my skin, I’ve had bad wounds and cuts – but nothing even comes close to how painful a migraine can be.

When I’m not dealing with the pain of an attack, I’m constantly anticipating when the next one could be. Will it interrupt something I have planned? Should I cancel something just in case it’s too much? What if doing this triggers an attack? Maybe I shouldn’t risk even going because to have a migraine would be too difficult to manage at that event. I’m thinking about what I’m eating, what I’m doing, how much water I’m drinking, whether I’ve over exerted myself. It’s a state of anxiety that whilst difficult enough to handle as it is, can’t help but spill out into other areas in your life. I’ve got angry at friends who can’t help but not understand. I’ve stopped myself doing things or going places that I really wanted to. That anxiety has become a part of how I operate. It’s exhausting.

When it’s not the anticipation, it’s the after-math. After my University friends have had to watch me vomit all night long, held packets of ice against my face until the ambulance arrived, tried to keep me calm whilst I’ve tried to scream or speak but can’t move my tongue or my body for the paralysis. There’s been feelings of shame, embarrassment, apologies and more anxiety. It’s hard to upset the people you love and care about, who, whilst obviously love you too, shouldn’t have to watch scenes similar to the exorcist on a regular basis.

It’s very easy to forget that you’re not alone and others suffer from variants of migraine too. I think maybe it’s something to do with the illness being located in your head, it can make you feel completely trapped. Particularly with hemiplegic migraine, it can sometimes feel like you’re locked in. You can’t fully move, talk, listen to anything, concentrate, see clearly – all you can do is be trapped inside your skull with the hurting.

Then, as a student, when you’re not having an attack, you’re struggling to explain to other young people what exactly it is that’s wrong with you. You’re trying to explain to University teachers that you’ve had a migraine (which isn’t just a bad headache!) and are now bed bound and unable to attend lectures. You’re trying to do student things, like drink and go out and have fun! But it’s always there in the back of your mind.

Most recently a migraine attack got in the way of my final exams and I had to leave, losing out on the grade I wanted. I’m hoping with more research, at some point, my hemiplegic migraines can be helped and I can feel a bit more like a normal twenty-something!

The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.