I have lived with migraine for most of my life but after a migraine attack that caused a complete blackout 10 years ago, it has taken over my life. Now, I rarely travel more than 15 minutes from my house alone, have had to give up my work and I spend most of my time in bed.

I was 12 years old when I first experienced migraine. My mother had them, so I knew a bit about migraine attacks from her experience – she’d take painkillers and have to lie down in a dark room with a cold cloth on her head. Still, it was scary when it first happened to me. Like her, when a migraine attack would come on roughly once a month, I would lay down in a dark room and try to sleep.

I lived my life around migraine, telling employers that when an attack was bad, I wouldn’t be able to attend work but that I would always make up the time lost. This approach worked well throughout my working career, until 2014, when everything changed.

‘I had blacked out completely’

In August of 2014, I was getting back into my work vehicle after a visit to a customer, putting on my seatbelt and starting the engine, when suddenly everything went dark. I had blacked out completely. A passerby had noticed and come to check on me, and it became clear that 20 minutes had passed. I was so lucky it didn’t happen when I was driving. The migraine pain when I came round was blinding. Thankfully, I wasn’t far from my mother-in-law’s house, and so I went over there and collapsed on her couch. I woke several hours later with the migraine down to just a dull headache. I managed to get home and again went to bed.

The next day I went to see my GP. He immediately signed me off work and sent me to hospital for tests. Over the next several weeks the migraine attacks got more and more frequent. I was suffering up to 5 attacks a week.

With the start of an attack, I often get a visual aura that I describe as like the old-fashioned horror movies where the red mist descends from the edges across the screen, except for me it’s purple. Then comes the head pain, which comes up across my head. It feels like my head is in a vice that keeps squeezing, until it feels like my head is going to pop. The pain gets to the point where I’m rocking back and forth on the floor, breathing as if I’m in labour, and headbutting the floor to try to distract from the pain of it. My speech can be slurred and my balance thrown off. Sometimes I just want to cry with the pain (although crying can sometimes make the pain worse).

The weeks, months and years after that blackout episode in 2014 involved all kinds of tests, scans and trying so many different treatments. Some of these treatments I’ve had horrific side effects with, but I have always said; ‘I will try anything if there’s a chance it could help with my migraine’. I keep very detailed migraine diaries, and I’ve tried to spot any patterns, food triggers or things I can avoid but haven’t had much luck. I’ve searched for the leading migraine specialists in the UK, and made appointments with them, including taking a 14-hour round trip for a 20-minute appointment. I’ve spent a week in hospital receiving treatment via an IV infusion. I’ve spent so much money. This is what I mean when I say I will do whatever it takes to find relief.

I went through the process of claiming benefits because of my migraine and the experience was horrific. I was initially denied benefits, and had to go through the appeals process, getting grilled in court and seeing my wife in tears from the stress of it all was awful. I am still glad that I fought the appeal, as I hope it will have paved the way for others whose lives have been turned upside down by migraine like mine has.

‘I realised it didn’t make me more of a man to hide that I was in pain’

For four years, I suppose I dealt with it like a ‘typical man’, in other words, I just got on with it and wouldn’t talk about it. But my dad brought me up saying ‘don’t be scared of anything’, including pain, and I realised it didn’t make me more of a man to hide that I was in pain. Eventually I started counselling, which has been so helpful.

Having my life taken over by migraine has really taken its toll. Migraine impacts every aspect of my life now – my house is fitted with blackout curtains because the light sensitivity is so bad. I spend so much time in bed; I slept over 1000 hours more than the average person last year, and that’s due to migraine. I used to be one of the fittest people I knew – I played football, I did karate. Now, walking up the stairs has become a struggle, my wife has to look after me, bringing my food up to me in bed, and I’ve put on a lot of weight.

I very rarely leave the house now without my wife, and I avoid travelling more than 15 minutes from home in case an attack would come on. I can become quite angry in the midst of an attack, and I worry about lashing out if I’m away from home and someone approaches.

‘I was so low, and I just felt that I couldn’t cope anymore’

In 2022, things got so bad that I tried to take my own life. I was so low, and I just felt that I couldn’t cope anymore. I struggled even to admit to my GP and counsellor that things had gotten so bad, but once I did it was like a weight had been lifted.

I think men need to lose this stigma of hiding pain. We also need to change this ‘just a headache’ thing that seems to go along with migraine. I’ve even had GPs say things to that effect! In my experience it’s better to talk about it than keep it inside. My advice to other men dealing with migraine would be to speak to someone in detail, let them know how you’re feeling, if your mood is low. Finding the right healthcare professionals can make such a difference. I have an outstanding counsellor who has even agreed to waive cancellation fees when I have to postpone an appointment due to migraine. I now also have an excellent GP and a specialist that have been so supportive.

I do not think I would be here if not for the support of my loving wife. There have been times she has had to help me to the bathroom because my balance is so affected during an attack. She works her socks off to keep things ticking over and support us both. I can see that she suffers when I suffer and that’s so hard.

I’ve been told that I have now exhausted all currently available treatment options, which is hard to hear. I have said that I am prepared to be involved in clinical trials for newer treatments that become available.

The preventive that I am taking now is one of the CGRP mAbs, and it has reduced my number of attack days from 83% down to 57% – this is a big improvement, but it still leaves me living with migraine over half the time. I do have hope that there are more treatments being developed, and I am more than willing to be a guinea pig for anything new, because I just want to get back to some kind of normal life.

‘Talking to others makes such a difference’

A couple of times, I’ve travelled with my wife to Managing Your Migraine events hosted by The Migraine Trust. Talking to others makes such a difference. I actually also tried to set up a group here in Denny where I live for people living with migraine but unfortunately only one person showed up. I don’t know whether it’s that people, and particularly men, just don’t want to talk about having migraine. It’s why I wanted to share my story, so maybe others can see it and feel less alone.

If you need support or have questions about living with migraine, you can call us on our free Helpline: 0808 802 0066 or online.