I’ve lived with migraine for many of my life however after a migraine assault that induced an entire blackout 10 years in the past, it has taken over my life. Now, I hardly ever journey greater than quarter-hour from my home alone, have had to surrender my work and I spend most of my time in mattress.
I used to be 12 years previous after I first skilled migraine. My mom had them, so I knew a bit about migraine assaults from her expertise – she’d take painkillers and must lie down in a darkish room with a chilly fabric on her head. Nonetheless, it was scary when it first occurred to me. Like her, when a migraine assault would come on roughly as soon as a month, I’d lay down in a darkish room and attempt to sleep.
I lived my life round migraine, telling employers that when an assault was dangerous, I wouldn’t be capable of attend work however that I’d all the time make up the time misplaced. This method labored nicely all through my working profession, till 2014, when every little thing modified.
‘I had blacked out utterly’
In August of 2014, I used to be getting again into my work car after a go to to a buyer, placing on my seatbelt and beginning the engine, when all of a sudden every little thing went darkish. I had blacked out utterly. A passerby had seen and are available to verify on me, and it turned clear that 20 minutes had handed. I used to be so fortunate it didn’t occur after I was driving. The migraine ache after I got here spherical was blinding. Fortunately, I wasn’t removed from my mother-in-law’s home, and so I went over there and collapsed on her sofa. I woke a number of hours later with the migraine all the way down to only a uninteresting headache. I managed to get residence and once more went to mattress.
The subsequent day I went to see my GP. He instantly signed me off work and despatched me to hospital for assessments. Over the subsequent a number of weeks the migraine assaults bought increasingly frequent. I used to be struggling as much as 5 assaults every week.
With the beginning of an assault, I usually get a visible aura that I describe as just like the old school horror motion pictures the place the pink mist descends from the perimeters throughout the display, apart from me it’s purple. Then comes the pinnacle ache, which comes up throughout my head. It appears like my head is in a vice that retains squeezing, till it appears like my head goes to pop. The ache will get to the purpose the place I’m rocking backwards and forwards on the ground, respiratory as if I’m in labour, and headbutting the ground to attempt to distract from the ache of it. My speech could be slurred and my steadiness thrown off. Generally I simply need to cry with the ache (though crying can typically make the ache worse).
The weeks, months and years after that blackout episode in 2014 concerned every kind of assessments, scans and making an attempt so many alternative remedies. A few of these remedies I’ve had horrific unintended effects with, however I’ve all the time mentioned; ‘I’ll attempt something if there’s an opportunity it might assist with my migraine’. I preserve very detailed migraine diaries, and I’ve tried to identify any patterns, meals triggers or issues I can keep away from however haven’t had a lot luck. I’ve looked for the main migraine specialists within the UK, and made appointments with them, together with taking a 14-hour spherical journey for a 20-minute appointment. I’ve spent every week in hospital receiving remedy through an IV infusion. I’ve spent a lot cash. That is what I imply after I say I’ll do no matter it takes to seek out reduction.
I went via the method of claiming advantages due to my migraine and the expertise was horrific. I used to be initially denied advantages, and needed to undergo the appeals course of, getting grilled in courtroom and seeing my spouse in tears from the stress of all of it was terrible. I’m nonetheless glad that I fought the enchantment, as I hope it is going to have paved the best way for others whose lives have been turned the wrong way up by migraine like mine has.
‘I realised it didn’t make me extra of a person to cover that I used to be in ache’
For 4 years, I suppose I handled it like a ‘typical man’, in different phrases, I simply bought on with it and wouldn’t discuss it. However my dad introduced me up saying ‘don’t be fearful of something’, together with ache, and I realised it didn’t make me extra of a person to cover that I used to be in ache. Finally I began counselling, which has been so useful.
Having my life taken over by migraine has actually taken its toll. Migraine impacts each side of my life now – my home is fitted with blackout curtains as a result of the sunshine sensitivity is so dangerous. I spend a lot time in mattress; I slept over 1000 hours greater than the common particular person final 12 months, and that’s resulting from migraine. I was one of many fittest folks I knew – I performed soccer, I did karate. Now, strolling up the steps has turn into a wrestle, my spouse has to take care of me, bringing my meals as much as me in mattress, and I’ve placed on a variety of weight.
I very hardly ever go away the home now with out my spouse, and I keep away from travelling greater than quarter-hour from residence in case an assault would come on. I can turn into fairly indignant within the midst of an assault, and I fear about lashing out if I’m away from residence and somebody approaches.
‘I used to be so low, and I simply felt that I couldn’t cope anymore’
In 2022, issues bought so dangerous that I attempted to take my very own life. I used to be so low, and I simply felt that I couldn’t cope anymore. I struggled even to confess to my GP and counsellor that issues had gotten so dangerous, however as soon as I did it was like a weight had been lifted.
I feel males must lose this stigma of hiding ache. We additionally want to alter this ‘only a headache’ factor that appears to go together with migraine. I’ve even had GPs say issues to that impact! In my expertise it’s higher to speak about it than preserve it inside. My recommendation to different males coping with migraine can be to talk to somebody intimately, allow them to understand how you’re feeling, in case your temper is low. Discovering the correct healthcare professionals could make such a distinction. I’ve an excellent counsellor who has even agreed to waive cancellation charges when I’ve to postpone an appointment resulting from migraine. I now even have a wonderful GP and a specialist which have been so supportive.
I don’t suppose I’d be right here if not for the assist of my loving spouse. There have been occasions she has had to assist me to the lavatory as a result of my steadiness is so affected throughout an assault. She works her socks off to maintain issues ticking over and assist us each. I can see that she suffers after I endure and that’s so onerous.
I’ve been advised that I’ve now exhausted all presently accessible remedy choices, which is tough to listen to. I’ve mentioned that I’m ready to be concerned in medical trials for newer remedies that turn into accessible.
The preventive that I’m taking now is among the CGRP mAbs, and it has decreased my variety of assault days from 83% all the way down to 57% – it is a huge enchancment, nevertheless it nonetheless leaves me residing with migraine over half the time. I do have hope that there are extra remedies being developed, and I’m greater than prepared to be a guinea pig for something new, as a result of I simply need to get again to some type of regular life.
‘Speaking to others makes such a distinction’
A few occasions, I’ve travelled with my spouse to Managing Your Migraine occasions hosted by The Migraine Belief. Speaking to others makes such a distinction. I truly additionally tried to arrange a gaggle right here in Denny the place I reside for folks residing with migraine however sadly just one particular person confirmed up. I don’t know whether or not it’s that folks, and significantly males, simply don’t need to discuss having migraine. It’s why I needed to share my story, so possibly others can see it and really feel much less alone.
Should you want assist or have questions on residing with migraine, you possibly can name us on our free Helpline: 0808 802 0066 or on-line.