Abigail’s experience of hemiplegic migraine

What hurts me more than anything is the lack of understanding of what living with migraine is like

My first migraine attack

I still remember the day I had my first hemiplegic migraine. I was generally a fit and healthy teenager who was very active but for whom a headache now and again was certainly not unusual.

I had been at home from school and was feeling quite under the weather. One thing was different though, the headache I was experiencing was rather severe and prolonged but besides this I felt a tingling sensation in my left limbs. I was alarmed but figured I’d probably been lying down in a strange position. It wasn’t until I went to the bathroom later and looked up in the mirror when I noticed a significant ‘droop’ in the left side of my face. Adding the fact that I had struggles to even walk to the bathroom I slowly started to become petrified.

I ended up going to A&E

Fast forward, I was in A&E and being seen by a wonderful paediatric consultant. Initially they thought I was experiencing a stroke, then followed the possibility of it being Bell’s Palsy. After being taken in for several scans the doctor made me aware that they wanted to rule out any possibility of a brain tumour. I must admit it was pretty terrifying hearing all these potential diagnoses. I was kept in hospital for about a week and referred to neurology. Many hospital appointments followed and the occasional A&E trip.

Lack of understanding about what I am living with

My hemiplegic migraine was the worst throughout sixth form and as a result my performance and attendance at school weren’t great.

What hurt me more than anything was the lack of understanding, which I still experience to this day. People often think having a migraine was just a really bad headache, and never really understood what the hemiplegic side of it is.

It was the same with my GP. Although I was seeing a neurologist, I would still visit my GP when I would experience really bad migraine attacks. He always tried to give me the most basic migraine medication which I had been told not to take by the neurologist. I never received adequate pain relief from my GP until I collapsed in his office and had to be wheeled out in a wheelchair.

More manageable

Today my migraine is a bit more manageable.

However, the social effects are still apparent. The second guessing and doubt from employers still remains and most people don’t even know I that I live with hemiplegic migraine.

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.

I want to share my story not only to inspire others but also myself. I am perfect the way I am. I can and I will overcome anything and the same goes for you.