Why I want to help others with migraine

By: Maddie Taylor, who lives with hemiplegic migraine and migraine with aura

17th February 2023

I’m 21 and I’ve had migraine attacks since I can remember. My dad had them when he was a child so I think I probably inherited them from him, although he has now grown out of them. At first I only experienced the classic migraine symptoms, I’d have the head pain and get aura and sickness sometimes too. In 2018, I was also diagnosed with hemiplegic migraine.

It was frightening when I had my first hemiplegic migraine attack. I was at college and the whole left side of my body went numb. I also get very blurry vision and feel confused. My parents were away so my granny took me to see the on call doctor at my local GP. We thought it might be a stroke.

My hemiplegic attacks tend to happen every six months to a year. When I first started having them, I couldn’t take my driving test. I also had Covid that year so I think being run down maybe made my migraine worse. Luckily because of Covid my A-levels were cancelled and I was given my predicted grades so I didn’t have to deal with exams and migraine at the same time.

After my first hemiplegic attack, my parents spoke to the doctors a lot and they were helpful. I’ve been using the Cefaly device every day which I think helps a lot, and I also take aspirin and Migraleve sometimes. I find sleep helps me but when I have a full-blown hemiplegic attack the only way to get rid of it is to make myself sick, even if it’s for a few hours.

I find eating a lot of sweet food seems to trigger my migraine attacks, and I think chocolate and cheese do too so I avoid eating them. My symptoms also seem to flare up in autumn and winter, although they have flared up in the summer before.

In 2021 I was also diagnosed with a condition called seronegative antiphospholipid syndrome (APS) which can cause migraine. I saw a really good rheumatologist about it and he sent me for a brain scan which was all clear. My APS can mean I sometimes have low-lying headaches and sickness, in addition to my migraine attacks. I also feel really tired a lot of the time.

Managing my migraine at work

I’ve been really lucky at work because my colleagues are very understanding, some of them have migraine too. It can be difficult because I might look totally fine in a meeting, and then if a migraine attack comes on suddenly I have to call and say I can’t work and will need a day or two off to recover. I work in tax so January is a really busy time for us and in my first January working for my current company I had an attack so had to take a few days off sick. Luckily everyone was understanding about it and they found people to cover my work.

I find being able to be flexible with where I work has helped me. I’m not in the office all the time. We hot desk but my colleagues are always very happy to make sure that I sit by a window so I can have some natural light. Last year our office had very low ceilings and bright lights so I asked if I could move and sit in the corner where the lighting was a bit better. I also always change my screen so it has a yellow filter and I wear filtered glasses in the office.

Why I’m taking on the Isle of Wight Ultra Challenge

On April 29 I will be taking on the Isle of Wight Ultra Challenge. I’ll be walking 25 kilometres up and down the hilly coastal path on the Isle of Wight, from Chale Basecamp to the Needles. My friend will also be taking on the challenge with me and supporting me along the way.

I really want to do something for people with migraine because I’ve had migraine my whole life. I’m also hoping that training for the challenge and keeping fit might improve my migraine.

I chose the Isle of Wight because I love its scenery and have been there a lot, my family has a holiday home there. I’ve chosen to do 25 kilometres rather than 54 because I have an exam a few days later, and I think training for 54 kilometres combined with exam stress would probably bring on a migraine attack!

I hope my Ultra Challenge helps to raise some much needed awareness about migraine. People need to understand that it is not ‘just a headache’ and that it can affect your whole life and career.

You can support Maddie’s fundraising here.

Learn more about hemiplegic migraine here. Find out more about doing a fundraising event for The Migraine Trust here