Rebekah's story

I'm hoping for more research and for a new medication

Rebekah

I’ve suffered from hemiplegic migraines since I was nine years old. The illness involves semi-paralysis, visual disturbances, speech difficulties and can look very similar to a stroke. I have an attack once every few 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 exhausted the available medications and still have yet to find something that works.

Impact on life

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 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 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.

The migraine attack

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.

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 overexerted myself. It’s a state of anxiety that while 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 aftermath. My university friends have had to watch me vomit all night long, sob with pain or they’ve held packets of ice against my face until the ambulance arrived. I’ve felt ashamed and embarrassed. It’s hard to upset the people you love and care about, who, while obviously love you too, shouldn’t have to go through that panic and fear.

Shared experience

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, sometimes you’re physically locked in. You can’t fully move, talk or see clearly – you’re just completely helpless and alone 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 why you’re bed-bound and unable to attend lectures. You’re trying to do student things, like drink and go out and have fun. But it never leaves your head, and you don’t get any freedom from it.

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 for more research and for a new medication – either to decrease the number of attacks I experience or the pain.

 

 

 

 

 

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.