Julie's story

"I prayed not to be hit with a migraine when I was attending interviews or other important events"

I had my first migraine when I was eleven, almost certainly triggered by puberty. It happened at school, and started with a classic visual aura. I was terrified I was going blind.

Too nervous to tell anyone, I vividly remember sitting in practice for our Summer concert, surrounded by eleven million Year 6 children singing at the top of their voices while I struggled with the most intense head pain I’d ever experienced and tried not to throw up.

My Grandma collected me at the end of the day and I just collapsed in tears. As it happens there’s a history of migraine on both sides of the family, so my Grandma immediately understood what was going on. My Mum (a chronic migraine sufferer herself, only without the aura) took me to the GP, who formally diagnosed me and prescribed Zolmitriptan.

My changing migraine

Fortunately my migraine were pretty infrequent for a few years following that first attack. I then started to notice an increase when I reached my late teens, and at eighteen I suddenly developed bizarre ‘trails’ in my visual field, whenever I moved from a dark to a light place or my eyes were particularly tired. No-one had a clue what could be causing them, but it’s since been concluded they’re almost certainly migrainous.

The migraine themselves steadily increased and always followed the same pattern, beginning with an aura. Generally connected to my hormones, but also triggered by bright light, low blood sugar or stress.

I worried it would disrupt my university examinations.

Managing my migraine

Even with Zomig, a new triptan that I was now taking, I had no choice but to stay in a dark room and spend hours wishing I could remove my head. The attacks would spread over several days, concluding with an unpleasantly weird emotional state I learned is known as ‘postdrome’.

I prayed not to be hit with a migraine when I was attending interviews or other important events.

I was concerned it would strike on my wedding day (fortunately it didn’t!).

In 2011, when I was 27, I developed a small blind spot in my vision that I assumed was the beginning of another migraine. When it persisted, I went for an eye examination and subsequently underwent exhaustive tests under a consultant opthalmologist who concluded that (fortunately!) my eyes were perfectly healthy.

That was when I first saw a neurologist, who after ruling out scary stuff like brain tumours via MRI scanning, concluded that my visual problems were indeed migrainous in origin.

Getting worse

By this time, my migraines were substantially more frequent – at least once a week – but instead of the usual classic aura, I started to have ‘splodges’ in my vision that would come and go on a daily basis. These were accompanied by a painful migrainous pressure that gradually became permanent. I gave up cheese, chocolate and alcohol, but that made no difference.

I still have the classic aura migraines from time to time, but in addition to those I now have permanent migrainous pain, and constantly experience visual disturbances like ‘splodges’ and vibrating lines. I’ve recently started experiencing hemiplegic numbness and shaking.

I am under a consultant neurologist and I can’t fault the dedication of the NHS staff who have treated me, but waiting times between appointments are huge and solutions are thin on the ground. I have been prescribed countless prophylactics and am on the waiting list for Botox but the cause of migraine still seems so poorly understood.

I’ve had to get used to a permanent migraine, that will be more or less painful as each day goes on.

Ideally, I wouldn’t work at a computer, travel long distances, spend too much time reading or go anywhere there might be loud music or bright lights, but I want to live my life. In the end, it’s a question of doing all these things with a migraine, or shutting myself away and still having a migraine.

Having said all that, I am an incredibly fortunate person with a supportive husband, family and beautiful young daughter. I sincerely hope she doesn’t develop migraine in the years to come, but I know that her genetic inheritance makes it quite likely. Hopefully by then there’ll have been a breakthrough in treatment! Even if not, at least she’ll have support from someone who knows exactly what it’s like, and will never dismiss it as ‘just a headache’.

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.