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Scary Migraine with Aura

Typing this sitting up in bed and feeling like a complete invalid, a failure at life, a caution to be around (who knows when one will strike) and a massive let down to myself in so many ways. Normally I wouldn’t cave in, I wouldn’t be forced to take to my bed, I fought it for 4 whole hours of numbness, blurred vision, zigzag vision and then the throbbing, banging all encompassing PAIN! Always coupled with the real fear I might become numb again or see double again – give me the pain over that ANY DAY! That’s like having a stroke – scared typing this as it MIGHT COME BACK – welcome to my world of 40yrs (I just turned 55) of migraine hell – with little to zero help, understanding or support..pain killers will never kill migraine. The aura killers only come maybe 2 out of 10 migraines but they are terrifying enough to implant the sort of fear that you could just die at any second. I’m so tired of reading stories about people telling me to ‘accept,’ ‘learn to live with,’ ‘find ways to cope’ blah blah blah as if on this hideous migraine journey there’s some sort of competition or CHOICE in who copes/deals with best – it’s hell, plain and simple with no winners a n y w h e r e….

This half life blight is getting me down – I used to run a business – not any more – I used to work full time – Now I’m in penury in a rented flat the size of a shoe box wondering how I could find a way to get cash to get migraine surgery etc etc etc – as if.

Apologies if I sound angry – that’s because I am – why isn’t the medical research there for people like me, like us…WITHOUT it costing a fortune to see a neurologist?! WE DIDN’T ASK FOR THIS!

The pain has sub-sided and is now sitting nicely throbbing like an Alice band over the top of my head – I have shades on like JackieO even though it’s dull and raining outside (hate British weather) and I have managed to eat a biscuit today…I know I’m moaning – I hate this, I hate the way it reduces me to a self pitying idiot. There are MUCH worse diseases out there and pediatric cancers and here am I feeling feeling sorry for myself – it’s shameful, but today I feel weak, it’s battered me – 24hrs of misery and fear and nausea and pain and migraine isolation.

Power to everyone on here who’s life is affected by the confusion of migraine – the indiscriminate nature of this condition – the lack of understanding from fellow human beings – the fear it instills – the boss you may be too afraid to tell for fear of dismissal/lack of job offer – to every person who missed a flight – a school play – a planned day out – and many many more occasions stopped dead in their tracks, thanks to MIGRAINE!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • John1381
    3 years ago

    Hello Maud

    Thank you for sharing, even through your pain and frustration you still thought about others in our situation, that is priceless. Thank you.

    Much of what you have written applies to me too. It is a wretched disease but this website and the so sensible moderators are more helpful than they realise. Thanks all.

    Keep going.

    John.

  • John1381
    3 years ago

    Hi Maud

    Yes, that’s my boy Hector. He is also a rescue dog and is a cross of English Pointer and we think Labrador. He certainly eats like one. Your dog sounds lovely, although I suspect energetic!

    I don’t think it is any harder being a man with chronic migraine, certainly not in my case, as I have always been quite open with emotions and feelings. Also my sister has chronic migraine so we have always been able to talk through our experiences. Maybe it would be different without her.

    Migraine has left me feeling worthless and incapable more often than not, paticularly at work when I just can’t understand something. That often triggers insecurity as I was repeatedly told at school that I was thick;I didn’t realise that I had migraine then. However managed a couple of degrees since then but it still hits me sometimes when the migraine is in process and I can’t think clearly.

    I feel overall I have had more support and understanding than not. And it’s lucky that I have an amazing wife that supports and understands the condition. However it is still such an isolating disease that it can be so hard for others to understand the extent of it. I still don’t realise realise even after 49 years of it.

    I wish you well and thanks for the reply.

    John.

  • Maud author
    3 years ago

    Hi John,

    Nice to hear from a fellow Migraineur – and so sorry to know you go through some of the same horrors as I do.

    As a man John, is it even harder in some ways facing this disease? I know that women tend to be more open in terms of saying what’s wrong with them – and I’ve yet to meet a man who has Migraine so would be interested to hear (only if you want to) how it is from a male perspective.

    Also, is that pic of your dog? If so, he/she is lovely! I have a cocker spaniel/border collie cross rescue boy who’s a complete joy!

    Take care and keep fighting the fight..

    Kind Regards – M –

  • DonnaFA moderator
    3 years ago

    Hi Maud,

    Thanks so much for sharing your story with us. I completely empathize with the light sensitivity. I have blackout curtains and on the worst of days, add a thick blanket, pinned at places to keep out even the smallest spark of light.

    Please know that you’re not alone, and that you’re not weak. Living with a chronic condition is draining, and sometimes we’re allowed to overwhelmed. Please know we’re here for youto share support and just to listen on those days that can feel like drowning.

    Thanks for being part of the community. Warmly, Donna (Migraine.com team)

  • Maud author
    3 years ago

    Hi Donna,

    Thank you for your kind words. I too have blackout blinds and am forced to wear sunglasses in Winter – I guess people may view me as vain 😉

    Finding this site has been a real comfort to me – 90% of coping with this hijacking condition is knowing I’m not alone…

    Kind Regards to you x

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